Susanne Guidetti

A randomised controlled trial of a client-centred self-care intervention after stroke: a longitudinal pilot study

Purpose. The aim of this randomised controlled pilot study of a client-centred self-care intervention (CCSCI) in individuals with stroke was to study (i) the feasibility of the study design, (ii) effects up to 12 months on activities of daily living (ADL), use of informal care and home help services and the caregiver burden. Method. An intervention group (IG) received CCSCI and a control group (CG) received ordinary training. Forty individuals with stroke (IG n = 19, CG n = 21) were included. Data were collected at 3, 6 and 12 months using established instruments. Results. After 12 months 24 people remained in the study (IG = 10, CG = 14). The data collection method was acceptable to most participants. At 12 months there were no differences in ADL, use of services or caregivers burden. Both groups improved significantly and clinically important improvements were achieved by 80% in the IG and 71% in the CG. Conclusions. The results should be interpreted with caution because of the small sample size and the large proportion of dropouts. However, the CCSCI appears promising as a way of recapturing self-care after stroke and a large randomised controlled trial is warranted, in which the present design and methods will be suitable with some modification.

Client-centred self-care intervention after stroke: A feasibility study

Abstract Background: The aim of the study was to evaluate the effect of client-centred, self-care intervention (CCSCI) on (i) activities of daily living (ADL) and life satisfaction in persons with stroke, (ii) caregiver burden, use of informal care and home-help services, and (iii) the feasibility of the study design. Design: Randomized controlled trial, a pilot study of an intervention group (IG) receiving CCSCI or a control group (CG) receiving ordinary training. Subjects: Forty persons with stroke (IG n = 19, CG n = 21) were included: non-demented, able to follow instructions, dependent regarding self-care and referred for rehabilitation, and their significant others (IG n = 8, CG n = 8). Method: Data were collected at baseline and three months later using established instruments regarding ADL, life satisfaction, caregiver burden, and use of health services from medical records, the county register, and by interviews. Results: There were no differences in ADL, life satisfaction, caregiver burden, or use of services at three months. Both groups improved significantly and clinically important improvements were achieved by 86% in IG and 63% in CG. Conclusion: The CCSCI appears promising for the recapturing of self-care after stroke and a large randomized controlled trial is warranted, in which the present design and methods with some modification will be feasible.

A client-centred ADL intervention : three-month follow-up of a randomized controlled trial

Abstract Objective: The aim was to study a client-centred activities of daily living (ADL) intervention (CADL) compared with the usual ADL intervention (UADL) in people with stroke regarding: independence in ADL, perceived participation, life satisfaction, use of home-help service, and satisfaction with training and, in their significant others, regarding: caregiver burden, life satisfaction, and informal care. Methods: In this multicentre study, 16 rehabilitation units were randomly assigned to deliver CADL or UADL. The occupational therapists who provided the CADL were specifically trained. Eligible for inclusion were people with stroke treated in a stroke unit ≤3 months after stroke, dependent in ≥two ADL, not diagnosed with dementia, and able to understand instructions. Data were collected at inclusion and three months thereafter. To detect a significant difference between the groups in the Stroke Impact Scale (SIS) domain “participation”, 280 participants were required. Intention-to-treat analysis was applied. Results: At three months, there was no difference in the outcomes between the CADL group (n = 129) and the UADL group (n = 151), or their significant others (n = 87/n = 93) except in the SIS domain “emotion” in favour of CADL (p = 0.04). Conclusion: The CADL does not appear to bring about short-term differences in outcomes and longer follow-ups are required.

Occupational Gaps in Everyday Life One Year After Stroke and the Association With Life Satisfaction and Impact of Stroke

Abstract Purpose: To examine the presence, frequency, and distribution of occupational gaps and to explore whether there are associations between occupational gaps and life satisfaction, self-rated recovery, and functioning and participation in activities of daily living (ADLs) 1 year after stroke. Method: Data were collected at onset and at 12 months after stroke from 161 patients admitted to a stroke unit in central Sweden by using Occupational Gaps Questionnaire, LiSat-11, Stroke Impact Scale, Katz ADL Index, and Barthel Index. Spearman rank correlation and Mann Whitney U test were used in the analyses. Results: Occupational gaps were reported by 87% of the participants. The number of occupational gaps was moderately associated with participation and self-rated recovery. There was a significant difference in the number of occupational gaps between the participants who were independent in ADLs and those who were not, both at baseline and at 12 months after stroke. There was, however, no significant association between occupational gaps and life satisfaction. Conclusions: Occupational gaps 1 year after stroke are very common, particularly among individuals experiencing difficulties in ADLs. Increased efforts are vital to enable individuals to do the activities that are important to them, irrespective of whether these are instrumental ADLs or leisure or social activities. Occupational gaps could be reduced by developing rehabilitation interventions that enable desired activities in different contexts that are crucial for individual patients.

PERCEIvEd oCCuPATIoNAl GAPS oNE yEAR AFTER STRokE: AN ExPloRATIvE STudy

OBJECTIVE To explore and describe factors associated with occupational gaps and to identify factors at 3 months that predict occupational gaps one year post-stroke. A gap, a restriction in participation, is considered to be present when there is a discrepancy between what the individual wants to do and what they actually do in everyday life. DESIGN Prospective longitudinal study. SUBJECTS Two hundred persons with stroke. METHODS Data from the Occupational Gaps Questionnaire, one year post-stroke, was used as the dependent variable in 3- and 12-month regression analyses. Domains of the Stroke Impact Scale, global life satisfaction, demographic and medical factors were used as independent variables. RESULTS At 3 months, activities of daily living abilities, social participation and not being born in Sweden predicted occupational gaps at 12 months. Stroke severity and not being born in Sweden and 3 factors at 12 months: social participation, self-rated recovery, and global life satisfaction were associated with occupational gaps. CONCLUSION Activities of daily living ability at 3 months predicted occupational gaps after stroke. Thus, it is possible to identify early on, and provide interventions for, those that risk participation restrictions. Not being born in the country might be an indicator of a risk for participation restrictions.

The combined perceptions of people with stroke and their carers regarding rehabilitation needs 1 year after stroke: a mixed methods study.

Objectives The aim of the study was to explore the associations between the dyad’s (person with stroke and informal caregiver) perception of the person with stroke’s rehabilitation needs and stroke severity, personal factors (gender, age, sense of coherence), the use of rehabilitation services, amount of informal care and caregiver burden. Further, the aim was to explore the personal experience of everyday life changes among persons with stroke and their caregivers and their strategies for handling these 1 year after stroke. Design A mixed methods design was used combining quantitative and qualitative data and analyses. Setting Data were mainly collected in the participants’ homes. Outcome measures Data were collected through established instruments and open-ended interviews. The dyads perceptions of the person with stroke’s rehabilitation needs were assessed by the persons with stroke and their informal caregivers using a questionnaire based on Ware’s taxonomy. The results were combined and classified into three groups: met, discordant (ie, not in agreement) and unmet rehabilitation needs. To assess sense of coherence (SOC) in persons with stroke, the SOC-scale was used. Caregiver burden was assessed using the Caregiver Burden Scale. Data on the use of rehabilitation services were obtained from the computerised register at the Stockholm County Council. Participants 86 persons with stroke (mean age 73 years, 38% women) and their caregivers (mean age 65 years, 40% women). Results Fifty-two per cent of the dyads perceived that the person with stroke’s need for rehabilitation was met 12 months after stroke. Met rehabilitation needs were associated with less severe stroke, more coping strategies for solving problems in everyday activities and less caregiver burden. Conclusions Rehabilitation interventions need to focus on supporting the dyads’ process of psychological and social adaptation after stroke. Future studies need to explore and evaluate the effects of using a dyadic perspective throughout rehabilitation.

Training in client-centeredness enhances occupational therapist documentation on goal setting and client participation in goal setting in the medical records of people with stroke

Objective: The aim of the present study was to compare client-centeredness as it was documented by the occupational therapists in the units randomized to the intervention clusters with documentation by occupational therapists in the control clusters. Design: Comparison of medical records. Setting: The study is conducted in a context of a randomized controlled trial in Sweden, with 16 post-stroke rehabilitation units cluster randomized to intervention or control group. Subjects: Occupational therapist documentation in medical records of 279 clients with stroke. Main measures: The medical records were reviewed for their level of client-centeredness using a protocol developed from the Stewart et al model. The occupational therapists in the intervention groups participated in a workshop training to enhance their client-centeredness. Results: Occupational therapists with training in client-centeredness documented significantly more on goal setting (OR = 4.1; 95% CI, 1.87-8.81), on client participation in goal setting (OR=11.34; 95% CI, 5.97-21.57), on how the goals could be reached (OR=2.8; 95% CI, 1.7-4.62), on client participation in how goals could be reached (OR=4.56; 95% CI, 2.73-7.64), on the follow-up on goals (OR=5.77; 95% CI, 2.78-11-98) and on client participation in follow-up on goals (OR=7.44, 95% CI, 4.33-12.8). This association remained after adjustment for healthcare setting, client socio-demographic variables, and stroke severity. Conclusion: Documentation of goal setting and client participation in goal setting can be influenced by training.

A "CLIENT-CENTRED ACTIVITIES OF DAILY LIVING" INTERVENTION FOR PERSONS WITH STROKE: ONE-YEAR FOLLOW-UP OF A RANDOMIZED CONTROLLED TRIAL

OBJECTIVE To compare changes regarding perceived participation, independence in activities of daily living (ADL) and life satisfaction between 3, 6 and 12 months after inclusion in a study of a client-centred ADL intervention and usual ADL intervention after stroke. DESIGN A multicentre randomized controlled trial. METHODS Sixteen rehabilitation units were randomly assigned to provide client-centred ADL intervention or usual ADL intervention. Eligible participants were persons ≤ 3 months after stroke who had been treated in a stroke unit, were dependent in two ADL domains, had not been diagnosed with dementia, and were able to understand instructions. Data collection was performed by blinded assessors. The primary outcome, perceived participation, was assessed with the Stroke Impact Scale 3.0, domain 8. The secondary outcomes, participation, independence in ADL, and life satisfaction, were assessed with validated instruments. For statistical power, 280 participants were required. Statistical analyses were performed on an intention-to-treat basis. RESULTS There were no differences between the groups regarding changes in perceived participation, independence in ADL, or life satisfaction during the first 12 months. There was a trend towards a clinically meaningful positive change in perceived participation that favoured client-centred ADL intervention. CONCLUSION Further research is required to understand the benefits of client-centred interventions.

Occupational therapists experiences of implementing a new complex intervention in collaboration with researchers: a qualitative longitudinal study

Abstract Background: This study was conducted in the context of a randomized controlled trial where occupational therapists (OTs) in collaboration with researchers implemented a client-centred activity of daily living intervention (CADL) for persons with stroke. Objective: The aim was to identify and describe over time the OTs’ experiences regarding the collaboration with the researcher in their role as implementers of a new complex intervention. Method: Focus group interviews were conducted with 33 OTs, two, six and 12 months after they had participated in a five-day workshop. The interviews were analysed using a grounded theory approach. Results: Three categories were identified: (1) Including in the scientific world, (2) Involving as an implementer of science and (3) Integrating in a partnership. One core category emerged: The implementation of client-centred intervention enabled the fusion of practice and science. An increased experience of using CADL and support from the researchers changed the OTs’ attitudes towards engaging in research from being an outsider to the scientific world to being included and then becoming a part of the research as an implementer of science. Conclusions: To create a context built on a collaborative partnership between practitioners and researchers enabled the fusion of practice and science.

Association between satisfaction and participation in everyday occupations after stroke

Abstract Background: Within occupational therapy, it is assumed that individuals are satisfied when participating in everyday occupations that they want to do. However, there is little empirical evidence to show this. Aims: The aim of this study is to explore and describe the relation between satisfaction and participation in everyday occupations in a Swedish cohort, 5 years post stroke. Methods: Sixty-nine persons responded to the Occupational Gaps Questionnaire (OGQ). The questionnaire measures subjective restrictions in participation, i.e. the discrepancy between doing and wanting to do 30 different occupations in everyday life, and satisfaction per activity. Results were analysed with McNemar/chi-square. Results: Seventy percent of the persons perceived participation restrictions. Individuals that did not perceive restrictions in their participation had a significantly higher level of satisfaction (p = .002) compared to those that had restrictions. Participants that performed activities that they wanted to do report between 79 and 100% satisfaction per activity. Conclusion: In this cohort, there was a significant association between satisfaction and participating in everyday occupations one wants to do, showing that satisfaction is an important aspect of participation and substantiates a basic assumption within occupational therapy. The complexity of measuring satisfaction and participation in everyday occupations is discussed.