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 |