Anne Visser-Meily

Rehabilitation of stroke patients needs a family-centred approach

Purpose. To highlight the importance of the spouse in stroke rehabilitation. Stroke not only affects the patients, but also their families, but rehabilitation practice is still primarily focused on the patient only. Method. Analysis of the position of the spouse and possible consequences of stroke for the spouse, based on the literature. Results. Three roles of spouses are described: (i) the role of caregiver, as the spouse often provides extensive and comprehensive care for the patient; (ii) the role of client, as this informal care may lead to physical and emotional strain; and (iii) the role of family member, as the stroke affects the interpersonal relationships within the family system, not least the emotional and sexual relationship between the partners. This analysis provides an understanding of problems experienced by spouses as roles conflict and identifies topics for assessment and interventions directed at the spouse in the acute phase, rehabilitation phase and chronic phase of stroke. Conclusion. We support a family-centred approach in which the strengths and needs of all family members, the patient with stroke included, are considered throughout all phases of the rehabilitation process.

Psychosocial Functioning of Spouses of Patients With Stroke From Initial Inpatient Rehabilitation to 3 Years Poststroke: Course and Relations With Coping Strategies

Background and Purpose— Few studies have focused on long-term changes in the caregiving experience after stroke. This study assessed changes in the psychosocial functioning of spouses (burden, depressive symptoms, harmony in the relationship between patient and spouse, and social relations) during the first 3 years after stroke and identified predictors of the course of spouses’ psychosocial functioning based on the characteristics of patients and spouses with special emphasis on coping style. Methods— We examined 211 couples shortly after the patient’s admission to a rehabilitation center, 197 2 months after discharge, 187 1 year poststroke, and 121 3 years poststroke. Burden was assessed using the Caregiver Strain Index, depressive symptoms with the Goldberg Depression Scale, harmony in the relationship with the Interactional Problem Solving Inventory, and social relations with the Social Support List. Multilevel regression analyses were performed. Results— A significant effect of time (P<0.01) was found for all 4 aspects of spouses’ psychosocial functioning. Although burden decreased, harmony in the relationship and social relations also decreased. The depression score showed a nonlinear pattern with an initial decrease but a long-term increase. All outcomes were significantly related to caregiver coping strategies. A total of 15% to 27% of the variance in psychosocial functioning could be explained. Conclusions— Follow-up of spouses of patients with stroke requires not only assessment of burden, but also other aspects of psychosocial functioning like harmony in the relationship, depression, and social relations, because our results show negative long-term consequences of stroke for these aspects of caregiver quality of life.

Spouses' quality of life 1 year after stroke: Prediction at the start of clinical rehabilitation

Background and Purpose: The purpose of this prospective study was to identify early predictors of spouses’ quality of life at 1 year after stroke. Methods: At the start of clinical rehabilitation patient and caregiver characteristics, psychological factors, harmony in the relationship and social support were assessed. One year after stroke, caregiver burden (Caregiver Strain Index), life satisfaction (Life Satisfaction Checklist) and depressive symptoms (Goldberg Depression Scale) were assessed in 187 participants. Multiple regression analyses were performed. Results: About 80% of the spouses reported low quality of life on one or more of the measures; 52% reported depressive symptoms, 54% significant strain and only 50% was satisfied with life as a whole. The regression analysis identified ‘passive coping strategy of the caregiver’ as the most important predictor. ADL dependency was the only baseline patient characteristic significantly related to burden and life satisfaction, but explained just 0–4% of the variance. Conclusions: A large proportion of caregivers perceive impaired quality of life 1 year after stroke. Caregivers at risk should be identified at the start of rehabilitation by means of coping measurement instruments or selected anamneses on coping.

Predicting Functional Outcome after Stroke: The Influence of Neglect on Basic Activities in Daily Living

One prominent deficit resulting from stroke is visuo-spatial neglect, which has been associated with slower and more attenuated recovery patterns of sensory-motor impairment as well as limitations in activities of daily living (ADL). The aim of the current study was to further specify the relationship between neglect and recovery of different domains of ADL. One hundred eighty four patients were assessed with the Functional Independence Measure in the first week of inpatient rehabilitation, and again at 6, 12, and 36 months post-stroke. On average, neglect patients scored significantly lower on Self-care, Transfers, and Locomotion compared to non-neglect patients, but these differences became smaller with progress of time. Overall, no differences between groups were found for Sphincter control and Cognition. Patients with more severe neglect scored significantly lower on Self-care and Transfers compared to patients with mild neglect. During rehabilitation, it would be of importance to test for independence in ADL domains in neglect in order to define realistic treatment goals. The current findings could be taken into account in early multidisciplinary intervention planning in the sub-acute phase, to optimize regaining ADL.

Impact of early applied upper limb stimulation: The EXPLICIT-stroke programme design

BackgroundMain claims of the literature are that functional recovery of the paretic upper limb is mainly defined within the first month post stroke and that rehabilitation services should preferably be applied intensively and in a task-oriented way within this particular time window. EXplaining PLastICITy after stroke (acronym EXPLICIT-stroke) aims to explore the underlying mechanisms of post stroke upper limb recovery. Two randomized single blinded trials form the core of the programme, investigating the effects of early modified Constraint-Induced Movement Therapy (modified CIMT) and EMG-triggered Neuro-Muscular Stimulation (EMG-NMS) in patients with respectively a favourable or poor probability for recovery of dexterity.Methods/design180 participants suffering from an acute, first-ever ischemic stroke will be recruited. Functional prognosis at the end of the first week post stroke is used to stratify patient into a poor prognosis group for upper limb recovery (N = 120, A2 project) and a group with a favourable prognosis (N = 60, A1 project). Both groups will be randomized to an experimental arm receiving respectively modified CIMT (favourable prognosis) or EMG-NMS (poor prognosis) for 3 weeks or to a control arm receiving usual care. Primary outcome variable will be the Action Research Arm Test (ARAT), assessed at 1,2,3,4,5, 8, 12 and 26 weeks post stroke. To study the impact of modified CIMT or EMG-NMS on stroke recovery mechanisms i.e. neuroplasticity, compensatory movements and upper limb neuromechanics, 60 patients randomly selected from projects A1 and A2 will undergo TMS, kinematical and haptic robotic measurements within a repeated measurement design. Additionally, 30 patients from the A1 project will undergo fMRI at baseline, 5 and 26 weeks post stroke.ConclusionEXPLICIT stroke is a 5 year translational research programme which main aim is to investigate the effects of early applied intensive intervention for regaining dexterity and to explore the underlying mechanisms that are involved in regaining upper limb function after stroke. EXPLICIT-stroke will provide an answer to the key question whether therapy induced improvements are due to either a reduction of basic motor impairment by neural repair i.e. restitution of function and/or the use of behavioural compensation strategies i.e. substitution of function.EXPLICIT is registered at the Netherlands Trial Register (NTR, http://www.trialregister.nl., TC 1424)

When a parent has a stroke - Clinical course and prediction of mood, behavior problems, and health status of their young children

Background and Purpose— The purpose of this research was to describe the clinical course of children’s functioning (depression, behavioral problems, and health status) during the first year after parental stroke and to determine which patient-, spouse-, or child-related factors at the start of inpatient rehabilitation can predict children’s functioning after parental stroke at 1-year poststroke. Methods— Interviews with 82 children (4 to 18 years of age) and their parents (n=55) shortly after admission to a rehabilitation center, 2 months after discharge from inpatient rehabilitation, and 1 year after stroke. Depression was assessed using the Children Depression Inventory, behavioral problems with the Child Behavior Check List, and health status with the Functional Status II. Potential predictors were gender and age (child), activities of daily living disability and communication ability (patient), and spouse’s depression and perception of the marital relationship. Results— At the start of the stroke patient’s rehabilitation, 54% of the children had ≥1 subclinical or clinical problems, which improved to 29% 1 year after stroke. Children’s functioning 1 year after stroke could best be predicted by their functioning at the start of rehabilitation. Spouse depression and perception of marital relationship were also significant predictors. A total of 28% to 58% of the variance in children’s functioning could be explained. Conclusions— Children’s functioning after parental stroke improved during the first year after stroke. Identifying children at risk for problems 1 year after stroke requires assessment of children’s functioning and the healthy spouse’s depressive symptoms and perception of the marital relationship at the start of rehabilitation. This demonstrates the need for a family-centered approach in stroke rehabilitation.

Psychosocial functioning of spouses in the chronic phase after stroke: Improvement or deterioration between 1 and 3 years after stroke?

OBJECTIVE To describe the psychosocial functioning of spouses of stroke patients at 1 and 3 years after stroke and identify predictors of substantial negative change in psychosocial functioning. METHODS Prospective study (N=119). Five domains of psychosocial functioning were assessed: burden, life satisfaction, depression, harmony in the relationship and social support. We used paired t-tests to describe changes and identified substantial changes using an Effect Size of 0.5 as the cut-off point. RESULTS Fifty-one percent reported significant burden, 46% were dissatisfied with life and 51% reported depressive symptoms 1 year after the stroke. Changes in psychosocial functioning between 1 and 3 years post stroke were reported by 27%-57% of the spouses. Although burden improved, life satisfaction, social support and harmony in the relationship deteriorated significantly. The percentage of spouses with depressive symptoms remained stable. Spouses with young children were at risk of deteriorating psychosocial functioning. CONCLUSIONS A large proportion of spouses experience serious caregiver burden, depression and decreased life satisfaction, 1 year as well as 3 years after the stroke, and harmony in the relationship, social support and life satisfaction decline over time. PRACTICE IMPLICATIONS Rehabilitation programmes should give more attention to the relationship with the patients partner, family life and the maintenance of a support network.

Effects of Unilateral Upper Limb Training in Two Distinct Prognostic Groups Early After Stroke: The EXPLICIT-Stroke Randomized Clinical Trial

Background and Objective. Favorable prognosis of the upper limb depends on preservation or return of voluntary finger extension (FE) early after stroke. The present study aimed to determine the effects of modified constraint-induced movement therapy (mCIMT) and electromyography-triggered neuromuscular stimulation (EMG-NMS) on upper limb capacity early poststroke. Methods. A total of 159 ischemic stroke patients were included: 58 patients with a favorable prognosis (>10° of FE) were randomly allocated to 3 weeks of mCIMT or usual care only; 101 patients with an unfavorable prognosis were allocated to 3-week EMG-NMS or usual care only. Both interventions started within 14 days poststroke, lasted up until 5 weeks, focused at preservation or return of FE. Results. Upper limb capacity was measured with the Action Research Arm Test (ARAT), assessed weekly within the first 5 weeks poststroke and at postassessments at 8, 12, and 26 weeks. Clinically relevant differences in ARAT in favor of mCIMT were found after 5, 8, and 12 weeks poststroke (respectively, 6, 7, and 7 points; P < .05), but not after 26 weeks. We did not find statistically significant differences between mCIMT and usual care on impairment measures, such as the Fugl-Meyer assessment of the arm (FMA-UE). EMG-NMS did not result in significant differences. Conclusions. Three weeks of early mCIMT is superior to usual care in terms of regaining upper limb capacity in patients with a favorable prognosis; 3 weeks of EMG-NMS in patients with an unfavorable prognosis is not beneficial. Despite meaningful improvements in upper limb capacity, no evidence was found that the time-dependent neurological improvements early poststroke are significantly influenced by either mCIMT or EMG-NMS.

Long-term outcome in children of patients after stroke

OBJECTIVE To investigate the long-term effects on children of parental stroke, with respect to care-giving tasks, childrens behavioural problems and stress, and to study the relationship between stress and child, patient and partner characteristics. SUBJECTS A total of 44 children (age range 10-21 years) were assessed 3 years after parental stroke. MAIN MEASURES Behavioural problems were assessed with the Child Behaviour Check List and the Youth Self-Report. Stress was measured using the Dutch Stress Questionnaire for Children. RESULTS Most children (66%) assisted their parent in self-care or mobility. Some of the children (31%) experienced behavioural problems. The results showed that 37.5% of younger children show externalizing problems on the Child Behaviour Check List. Stress was significantly related to female gender of the child, and to depression, limitations in extended activities of daily living and life satisfaction of the patient. CONCLUSION Most children do well 3 years after parental stroke. However, some children of patients after stroke have behavioural problems and need attention in clinical practice.

Patients with Severe Poststroke Fatigue Show a Psychosocial Profile Comparable to Patients with Other Chronic Disease: Implications for Diagnosis and Treatment

Objective. To obtain a psychosocial profile of patients with poststroke fatigue (PSF), which could aid in optimizing treatment strategies. Methods. Eighty-eight outpatients with severe PSF measured with the Checklist Individual Strength-fatigue subscale (CIS-f) and the Fatigue Severity Scale (FSS) were selected. Depression and anxiety, psychological distress, coping, social support, and self-efficacy of this group were compared to reference groups of healthy controls and patients with other chronic diseases. Associations between psychosocial characteristics and fatigue were calculated. Results. Compared to healthy controls, patients with PSF reported more psychological distress, less problem-focused coping, and more positive social support. Minor or no differences were found in comparison with other chronic patients. The CIS-f correlated with somatic complaints and the FSS with cognitive complaints. Conclusion. Patients with PSF show a psychosocial profile comparable to patients with other chronic disease. Implications for diagnosis and treatment are discussed.