Table 3.

Evidence table

Author (year) country	Study aim	Sample	Data collection methods; outcome measures	Details of intervention or outcome measure	Results
Burton (2000) UK	To describe the lived experience of recovery from the patient’s perspective	Number: 6 Age: 52–81 (range) Gender: 2 (male), 4 (female) Ethnicity: Not stated (NS) Marital status: married: 2, widowed: 2, divorced: 1, single: 1 Employment: employed: 2, not employed: 4 Time: NS; Severity: NS	Data collection: unstructured and semi‐structured interviews, monthly for up to 1 year Measures: Not applicable (N/A)	Not applicable (N/A)	Main findings: Recovery from stroke involved restructuring and adaptation in physical, social and emotional aspects of life. No end point of recovery was described. Social participation was prioritized over physical function
Clark & Rugg (2005) UK	To determine the views of stroke survivors and occupational therapists regarding the importance of independent toileting	Number: 13 Age: 75 (mean) Gender: 4 (male), 9 (female) Ethnicity: Caucasian: 13 Marital status: NS Employment: NS Time: 19 days (mean) Severity: NS	Data collection: One‐off semi‐structured interviews Measures: N/A	N/A	Main findings: Independence in toileting was important as it avoided the need for assistance and avoided feelings of decreased self‐esteem The method of toileting was important, not just independent conduct of the activity
Cup et al. (2003) Netherlands	To research test–retest reliability and validity of the Canadian Occupational Performance Measure (COPM) in patients with stroke	Number: 26 Age: 68 (mean) Gender: 11 (male), 15 (female) Ethnicity: NS Marital status: NS Employment: NS Time: 2 months: n = 2, 6 months: n = 24 Severity: Ranking score ≤ 2	Data collection: structured interviews; Measures: COPM, Barthel Index (BI), Frenchay Activities Index (FAI), Stroke Adapted Sickness Impact Profile 30, Euroqol 5D, Rankin	Outcome measure testing Measure: COPM Patient group: community‐dwelling general stroke population Psychometric testing: discriminant validity and test–retest reliability	Test–retest reliability: performance score – Spearman’s rho correlation coefficient 0.89 (P < 0.001) and satisfaction score – 0.88 (P < 0.001) Discriminant validity: confirmed
Duncan et al. (2001) USA	To ensure content validity of a new stroke outcome measure: the Stroke Impact Scale	Number: 30 Age: minor stroke: 69.2 (mean), moderate stroke: 71.9 (mean) Gender: 15 (male), 15 (female) Ethnicity: White: 24, Hispanic: 1, African‐American: 5 Marital status: Married: 16 Employment: NS Time: ≤6 months Severity: NIH SS mild (n = 14) 1.9 (SD 1.4); moderate (n = 16) 3.5 (SD 2.73)	Data collection: Series of 3 structured interviews, focus groups; Measures: Orpington Prognostic Scale (OPS), National Institutes of Health Stroke Scale (NIHSS), Folstein Mini‐Mental, Geriatric depression Screen, Lawson IADL, MOS‐36 physical function	Outcome measure development Focus: physical function, emotion, memory and thinking, communication, role function (social participation Patient group: general stroke population Assesses: 8 domains: strength, hand function, activities of daily living (ADL) and instrumental ADL, mobility, communication, emotion, memory and thinking, participation Items: 64; self‐report Completion time: NS Psychometric testing: test–retest reliability, construct validity Patient‐centred: developed using patient‐derived data	Test–retest reliability: Cronbach α coefficients ranged from 0.83 – 0.90 and met criteria for change over time. Intraclass correlation coefficients (ICCs) of the 8 domains were in the range 0.7 – 0.92, except for emotion (0.57) Validity: Domains compared with established measures – correlations were moderate to stroke (0.44–0.84)
Ekstam et al. (2007) Sweden	To explore change in function during the first year after stroke for elderly patients participating in rehabilitation at home	Number: 27 Age: 78.8 (mean) Gender: 9 (male), 18 (female) Ethnicity: NS Marital status: NS Employment: NS Time: 1 month (approx) Severity: Scandinavian Stroke Scale: 49 (median)	Data collection: a series of 4 structured interviews over 12 months Measures: Life Satisfaction Scale, Scandinavian Stroke Scale, Timed Up and Go, Centre for Epidemiological Studies Depression scale, Assessment of Motor and Process Skills, Katz Extended Index of ADL, FAI, Occupational Self Assessment	Focus: improving patient satisfaction with life following stroke; includes functioning, life events, environmental barriers Location: patients’ own homes Duration: daily for 29 days (mean), for 1 h (approx) Delivery: one‐to‐one Content: task‐oriented interventions meaningful to patient. Staff: nurse, occupational therapist (OT), physiotherapist plus doctor, social worker, speech and language therapist, psychologist, if required Staff training: NS	Main findings: 4 different patterns identified: 1: moderate change in function (n = 4), 2: minor change (n = 11), 3:minor change despite major life event (n = 7), 4: disrupted change in functioning (n = 5) The group improved significantly in most aspects of functioning, but most participants (n = 20) showed dissatisfaction with life at 12 months post‐stroke
Ellis‐Hill et al. (2009) UK	To develop patients’ experiences of the transition from hospital to home	Number: 20 Age: 70 (mean) Gender: NS; Ethnicity: NS Marital status: Married; 10 Employment: NS Time: NS Severity: BI 16.3 (mean)	Data collection: one‐off semi‐structured interviews Measures: BI, Functional Ambulation Category	N/A	Main findings: Participants described recovery in terms of momentum and getting on with life Discharge was successful if momentum was maintained, patients felt supported and were kept informed
Fox et al. (2004) USA	To identify the critical elements and outcomes of a residential intervention for families living with aphasia	Number: Family members (FMs):19, People with Aphasia (PwA): 19 Age: range 47–76 Gender: NS Ethnicity: NS Marital status: Married couples: 10 Employment: NS Time: 3 months–10 years Severity: NS	Data collection: telephone interviews and focus groups, one month after the intervention Measures: none	Focus: support for caregivers and PwA Location: residential camp Duration: 2 days Delivery: group sessions Content: communication methods, information, respite, enhancing support networks, establishing new support networks Staff: Group facilitators supported by nurses, and speech and language Therapists Staff training: Group facilitators trained in advanced educational methods and therapeutic group processes	Main findings: Critical intervention elements: Provision of an emotionally and physically safe environment Respite from caregiving Peer learning Participants’ perspective: Renewed sense of hope Improved ability to access social support resources Caregivers improved ability to monitor their own wellbeing Greater acceptance of altered nature of the family Development of new social network
Glass et al. (2004) USA	To examine the effects of a family systems intervention designed to influence social support and self‐efficacy	Number: IG: 143, CG: 141 Age: IG: 69 (mean), CG: 70 (mean) Gender: IG: 74 (male), 69 (female), CG: 70 (male), 71 (female) Ethnicity: IG: White: 121, non‐white: 22, IG: White: 127, non‐white: 14, Marital status: IG: widowed: 32, CG: widowed: 48 Employment: NS Time: IG: 22 days (average) CG: 22 days (average) Severity: NS	Data collection: structured interviews at 3 time points up to 6 months post‐stroke Measures: BI, NIH Stroke Severity Index, Boston Aphasia Severity Rating Scale	Psychosocial intervention (PSI) Focus: social integration Location: own home or rehabilitation centre Duration: once a week for 12 weeks, then 3 times per week for 12 weeks Delivery: 90‐min sessions, up to 15 sessions, family plus support network Content: self‐efficacy through stroke education, optimizing social support, maximizing stress reduction, enhanced problem solving, goal setting Staff: clinical psychologist or social worker; Staff training: PSI	Main findings: Functional recovery did not differ between the two groups Adjusted logistic regression demonstrated that the odds of being functionally independent at 6 months were 60% higher in the intervention group; this was not statistically significant
Grant & Davis (1997) USA	To explore feelings of self‐loss from the perspective of family carers	Number: patients: 10, spouses/carers: 10 Age: patients: 62 (mean), spouses/carers: 48 (mean) Gender: patients: 4 (male), 6 (female), spouses/carers: 1 (male), 9 (female) Ethnicity: patients: African‐American: 5, White: 5, spouses/carers: African‐American: 5, White: 5 Marital status: 10 x dyads Employment: NS Time: NS; Severity: NS	Data collection: face‐to‐face semi‐structured interviews; telephone interviews 1 week later Measures: N/A	N/A	Main findings: Family caregivers experience four major self‐losses, i.e. loss of familiar self, autonomous self, affiliate self and the knowing self
Harris & Eng (2004) Canada	To identify goal priorities in patients with chronic stroke	Number: 19 Age: NS Gender: NS Ethnicity: NS Marital status: NS Employment: NS Time: 6.8 years (mean) Severity: 2.5 (mean) American Heart Association Stroke Outcome Classification (AHASOC)	Data collection: One‐off interviews; Measures: COPM, AHASOC	N/A	Most frequently cited problems: bathing (self‐care) 42%; household maintenance (productivity) 32%; walking outdoors (leisure) 32% Importance of domains: self‐care (8.5), productivity (8.3), leisure (8.7) Patient‐centred approach to assessment revealed that adults with chronic stroke reported issues that could benefit from rehabilitation input
Jansa et al. (2004) Slovenia	To introduce a client‐centred approach in an acute stroke setting	Number: 80 Age: 65 (mean) Gender: 52 (male), 28 (female) Ethnicity: NS Marital status: NS Employment: NS Time: 7 days post admission (mean) Severity: NS	Data collection: Assessment at start and end of occupational therapy input; Measures: Extended Barthel Index, COPM	N/A	Frequency of problems: self‐care 97%; productivity 17%; leisure 44% Most frequently cited: self‐care 78%; productivity 10%; leisure 12% Patient‐centred approach to assessment in an acute setting was possible with 36% of patients; other patients could not participate because of impaired cognition, communication, or emotional functioning
Kersten et al. (2004) UK	To test the validity of the Subjective Index of Physical and Social Outcome (SIPSO)	Number: 390 Age: 55.7 (median), 21–66 (range) Gender: 222 (male),150 (female) Ethnicity: NS Marital status: NS Employment: Employed: 81, Retired early: 205, Not employed: 79 Time: ≤5 years: 303, >5 years: 72, NS: 15 Severity: NS	Data collection: Cross‐sectional survey Measures: Southampton Needs Assessment Questionnaire for People with Stroke which incorporated SIPSO	Outcome measure testing Patient group: aged 18–65; 1–10 years post‐stroke Psychometric testing: content validity and test–retest reliability	Internal reliability: ICC 0.91 (95% CI, 0.90–0.92), item to total SIPSO correlations: 0.52–0.83 (range) Construct validity: good – those with poorer employment, mobility and sex‐life outcomes had lower SIPSO scores than those with better outcomes. Test–retest reliability: good – ICC for total score 0.96 (0.92–0.98), Physical component subscale 0.94 (0.88–0.97), Social component subscale 0.95(0.90–0.98). Excellent reliability and validity used with younger adults.
Ljungberg et al. (2001) Sweden	To develop a rehabilitation programme in which stroke team, patient and family act as partners in the process	Number: Intervention group (IG): 32; Control group (CG): 9 Age: IG: 72 (mean), CG: 72 (mean) Gender: IG: 14 (male),18 (female) CG: 6 (male), 3 (female) Ethnicity: IG: NS, CG: NS Marital status: Married: 16, Single: 6 Employment: NS Time: NS Severity: NS	Data collection: semi‐structured interviews at 5 time points, up to 12 months post‐discharge Measures: Functional Independence Measure, Quality from the Patient’s Perspective, Life satisfaction measure, study‐specific questionnaire to evaluate the education programme	Rehabilitation therapy component Focus: to improve functional ability and life satisfaction Location: own home or frail elderly unit Duration: 4 weeks Delivery: patient and family Content: collaborative care planning, therapy input, social support, leisure activities, security at home Staff: members of the multidisciplinary team (MDT), social work support services Staff training: stroke rehabilitation and care Education programme Focus: increase stroke knowledge, increase social support networks, improve daily life skills Location: NS Duration: five 2‐h sessions Delivery: group sessions (6–8 people); Content: as above Staff: MDT members Staff training: as above	Rehabilitation therapy component Functional ability: Intervention group had improved functional ability, participated in activities and were more active after 4 weeks, than the control group Life satisfaction: at 4 weeks: patients: 4.0 (mean), families: 3.8 (mean); at 6 months: patients: 3.1 (mean), families: 3.1 (mean); at 1 year patients: 3.5 (mean), families: 3.3 (mean) Admission time: shortened by 33% in the intervention group Education programme Respondents: n = 13 New knowledge: 8 Network enhancement: 10
					The authors suggest that patients were given the opportunity to make their own decisions, to be more active and motivated, and were able to carry out their preferred activities in their own home, which led to improvement in daily life function
Long et al. (2008) UK	To develop and validate a measure of communication effectiveness for people with communication problems post‐stroke	Number: 102 Age: 21–44: 6, 45–64: 31, 65–74: 28, ≥75: 33 Gender: 61 (male), 41 (female) Ethnicity: NS Marital status: NS Employment: Employed: 33, Unemployed: 69 Time: NS Severity: BI: 17 (mean)	Data collection: semi‐structured interviews; structured questionnaire delivered twice within weeks Measures: BI, Frenchay Aphasia Screening Test	Outcome measure development Focus: communication support Patient group: general stroke population Assesses: communication effectiveness following stroke Items: 29 Completion time: 20–25 min (median) – clinician support required; communication prompts are provided Psychometric testing: acceptability, reliability, item analysis Patient‐centred: patient’s perspective of communication effectiveness following stroke	Acceptability: good – few missing values, sample spread 28–100% Internal consistency and test–retest reliability: α = 0.95; ICC = 0.90 and subscales: α = 0.65–0.93; ICC = 0.72–0.88 Item analysis: 9 redundant items Revised scale (20 items): Internal consistency and test–retest reliability: α = 0.83–0.92; ICC = 0.72–0.88
Nordehn et al. (2006) USA	To explore patients’ and family members’ views of patient‐centred communication	Number: 9 Age: 40–75 (range) Gender: 6 (male), 3 (female) Ethnicity: Caucasian Marital status: NS Employment: NS Time: NS; Severity: ‘mild‐severe’	Data collection: one‐off focus groups Measures: N/A	N/A	Two key themes: Patients and families desire to be treated with respect It is important to allow adequate time for a person with a speech disorder to communicate
Pound et al. (1998) UK	To explore patients’ experiences of the consequences of stroke	Number: 40 Age: 71 (mean) Gender: 21 (male), 19 (female) Ethnicity: White: 35, Bangladeshi: 3, Caribbean: 2 Marital status: Married: 19 Employment: Last employment was manual n = 30 Time: 10 months Severity: ‘less disabled’	Data collection: one‐off semi‐structured interviews Measures: N/A	N/A	Key themes: Difficulty leaving the house, Unhappiness, Housework, Leisure activities, Walking, Talking, Washing and bathing, Relationships, Confusion/memory problems
Secrest (2000) USA	To investigate the experiences of primary support persons of stroke survivors	Number: 12 (spouses/carers) Age: 40–72 Gender:2 (male), 8 (female) Ethnicity: NS Marital status: Married: 8 Employment: Employed: 5, Retired early: 4 Time: 2–4 years Severity: NS	Data collection: one‐off semi‐structured interviews Measures: N/A	N/A	Phenomenological analysis revealed: the experience of being primary caregiver is grounded in the relationship in time, i.e. primary caregivers spoke of themselves in relation to others, rather than of themselves as individuals Against this ground emerged themes of fragility (fragility of life); vigilance (watching over the person who has had a stroke); loss (loss of an aspect of the person as they were before stroke); responsibility (changed roles in the relationship)
Studenski et al. (2001) USA	To provide patients and their families with information regarding recovery prognosis	Number: 413 Age: 69.9 (mean) Gender: NS Ethnicity: African‐American: 83 Marital status: NS Employment: NS Time: 3–14 days Severity: NS	Data collection: focus groups at 4 time points over 6 months Measures: NIHSS, OPS, BI, Lawton‐ Brodie ADL	Focus: Estimation of recovery rates in relation to five patient‐centred outcomes: severe dependence in self‐care, full independence in self‐care, independence in meal preparation, managing medications, community mobility Patient‐centred: information desired by patients and families	Baseline OPS predicted significant differences in recovery rates for all 5 outcomes (P < 0.0001) at 3 and 6 months Self‐care dependence: present at 3 months in only 3% of people with baseline OPS of ≤3.2 compared with over 50% with OPS ≥4.8 Independent self‐care, meal preparation and medications: present in 80% of OPS ≤ 2.4 compared with 20% when OPS was ≥4.4 Community mobility: achieved by 50% with OPS ≤ 2.4 compared with 3% when OPS was ≥4.4
Trigg et al. (1999) UK	To ensure the content validity of a new measure: the Subjective Index of Physical and Social Outcome	Number: Age: 30 Gender: 17 (male), 13 (female) Ethnicity: NS Marital status: Married: 22, Single: 8 Employment: NS Time: ≤6 months post‐discharge from rehabilitation unit Severity: NS	Data collection: one‐off semi‐structured interviews Measures: N/A	N/A	Outcome measure development: 4 main categories were identified: Activities affected by stroke, Leisure affected by stroke, Interaction affected by stroke, Environment affected by stroke
van Bennekom et al. (1996) Netherlands	To explore the appropriateness of using the Rehabilitation Activities Profile (RAP) to identify disabilities/problems from the perspective of patients following stroke	Number: IG: 33, CG: 24 Age: IG: 67.9 (mean), CG: 70.2 (mean) Gender: IG: 16 (male),17 (female), CG: 13 (male), 11 (female) Ethnicity: NS Marital status: Living with partner: IG: 24, CG: 11 Employment: Employed: IG: 6, CG: 7 Time: 6 months (both groups) Severity: NS	Data collection: one‐off structured interviews Measures: RAP	N/A	Patient‐perceived problems: Walking, Using transport, Leisure activities, Relationships (friends/ acquaintances) Perceived problem scores did not relate in a uniform way to disability scores. The proportions of patients with perceived problems showed statistically significant differences between IG and CG for 15 of 21 items (P < 0.02). Cumulative relative frequency distributions showed IG described significantly more problems than CG (P < 0.01)
Wressle et al. (1999) Sweden	To explore patients’ and professionals’ perspectives of goal setting stroke rehabilitation	Number: 5 Age: 82 (mean) Gender:1 (male), 4 (female) Ethnicity: NS Marital status: NS Employment: NS Time: NS Severity: NS	Data collection: 1–2 semi‐structured interviews Measures: N/A	N/A	Patients wanted to be: Able live at home; Attain pre‐stroke status; Physically active and mobile Able to travel (this was associated with a sense of freedom) Patents described: Changes to their role (inside and outside the family); Insecurity and fear Lack of self‐trust. Patients did not participate in goal‐setting; assumed a passive role when helpoffered