Patient case study: in the case of Miss Christine

Young stroke survivors often return to the community for ongoing recovery and reintegration. Their needs are somewhat different than their older counterparts, and they can be easily lost in the complex health care system of specialty and primary care services. This young woman and her outpatient rehabilitation providers exemplify some problems encountered and the persistent, caring, and successful work that teams can accomplish to maximize ongoing recovery.     

The difficulty of studying race-ethnic stroke rehabilitation disparities in a community

Objective: Minority populations have worse stroke outcomes compared with non-Hispanic whites (NHWs). One possible explanation for this disparity is differential allocation of stroke rehabilitation. We utilized a population-based stroke study to determine the feasibility of studying Mexican American-NHW differences in stroke rehabilitation in a population-based design including identification of community partners, development of standardized data collection instruments, and collection of pilot data.

Methods: As part of the Brain Attack Surveillance in Corpus Christi project, we followed 48 patients for the first 90 days after stroke, and attempted to work with community partners to garner information on rehabilitation modalities used. With input from local occupational and physical therapists and speech language pathologists, we created data collection forms to capture rehabilitation activities and time spent on these activities and conducted a 3-month data collection pilot.

Results: Of the 79 rehabilitation venues in the community, 63 (80%) agreed to participate. During the pilot, 545 data forms from 20 stroke patients were collected corresponding to ~18% of stroke patients. Forms were used by 13 partners during the pilot including 3 of 4 inpatient rehabilitation facilities, 4 of 13 skilled nursing facilities, 4 of 26 home health agencies, and 2 of 36 outpatient rehabilitation providers.

Conclusions: Initial agreement from rehabilitation providers to participate in research was excellent, but completion of study related data collection forms was sub-optimal suggesting this approach is not feasible for a future population-based stroke rehabilitation study. Further methods to study post-stroke rehabilitation disparities in communities are needed.     

A psychosocial intervention for stroke survivors and carers: 12–month outcomes of a randomized controlled trial

ABSTRACT

Background and Purpose: Stroke can have a devastating impact on the mental and physical health of stroke survivors and their carers. We aimed to evaluate the effectiveness of a novel psychosocial intervention designed to improve health outcomes in both groups.

Methods: We conducted a randomized controlled trial of a personalized psychosocial intervention (eight 1-hour weekly sessions plus one booster) compared to usual care for adult stroke survivors and carers. Participants recruited from hospital services and community referrals completed questionnaires at baseline, 3, 6, and 12 months. Primary outcomes were quality of life and self-efficacy; secondary outcomes were depressive and anxiety symptoms, coping, illness perception, work and social adjustment, carer strain, and carer satisfaction. Mixed-effect model repeated measures analysis between groups and across time was conducted.

Results: Of the 173 participants recruited (89 stroke survivors; 84 carers), a total of 137 participants – 73 stroke survivors (intervention n = 42; usual care n = 31) and 64 carers (intervention n = 35; usual care n = 29) – underwent analysis up to 12 months. No statistically significant differences were found in the primary outcomes between groups over time, though a significant improvement in carer satisfaction was found at 6 months in the intervention group compared to the usual care group.

Conclusion: A personalized psychosocial intervention resulted in a significant improvement in carer satisfaction at 6 months but in no other outcomes. A lack of available services and barriers to social engagement may have impeded the effectiveness of this intervention.     

Caring for stroke survivors: experiences of family caregivers in Sri Lanka – a qualitative study

Background: Stroke is a life-changing event for both stroke survivors and their family caregivers. After receiving acute care at the hospital, family members are expected to take care of stroke survivors at home and to continue treatment and rehabilitation. The new role of “informal caregiver” is a challenge that creates many difficulties for family caregivers that are not explicit in the Sri Lankan context.

Objectives: This study aimed at exploring family caregivers’ experiences of providing informal care for dependent stroke survivors.

Methods: The sample was chosen by purposive sampling with a maximum variation by age, ethnicity, religion, educational level, relationship, and monthly income. Ten informal family caregivers to stroke survivors with hemiplegia who had been treated at the National Hospital of Sri Lanka participated in in-depth interviews analyzed using conventional content analysis.

Results: Qualitative content analysis of data resulted in an overriding theme, “Caring with love, against all odds,” along with four categories, “Life alterations,” “Lack of resources,” “Compassionate care,” and “Coping strategies.” Although the increased workload, restricted social life, physical problems, and knowledge and financial deficits were challenging for the family caregivers, self-strength and supportive social networks helped them to compassionately care for their stroke survivor.

Conclusions: The phenomenon of family caregivers providing informal care for stroke survivors was explicated as compassionate care, notwithstanding numerous difficulties. The findings motivate further research and strategies to minimize family caregivers’ burden and facilitate the positive aspects of caregiving to promote the health and well-being of both stroke survivors and their families.     

Post-stroke Fatigue is an Independent Predictor of Post-stroke Disability and Burden of Care: A Path analysis Study

Post-stroke fatigue (PSF) is a common and one of the most distressing symptoms in stroke survivors. However, little is known about the relationship between severity of fatigue and the overall impact it has on post-stroke disability and burden of care. We aimed to examine the role of PSF in post-stroke disability and burden of care among stroke survivors after their first-ever stroke.

Methods: We prospectively recruited 163 subjects (35 females) from patients examined consecutively in a tertiary stroke care center in India, after their first-ever ischemic or hemorrhagic stroke (>3 months after event). In addition to demographic and clinical characteristics, the following assessments were done – SF-36 vitality domain (fatigue), Modified Rankin Scale (functional recovery), Hospital anxiety and depression scale (depression), Functional independence measure (disability and burden of care). We used path analysis to identify a model that will capture the interactions of fatigue, depression, and degree of functional recovery in stroke survivors.

Results: The severity of PSF positively correlated with the severity of disability and PSF had significant contribution to disability over and above functional recovery and depression, with all three factors accounting for 43% of the variance. Among the four models that were proposed to explore these relationships, the best fitting model showed that the effect of PSF is mediated through both the direct effect of fatigue on disability and through its interaction with depression, which remained a separate contributor to post-stroke disability and burden of care.

Conclusions: PSF, therefore, is an important determinant of post-stroke disability and should be evaluated for successful post-stroke rehabilitation.     

Associations between characteristics of stroke survivors and caregiver depressive symptoms: a critical review

Background: Poststroke depression is common in stroke survivors. Evidence suggests that caregivers of stroke survivors also experience depression, at rates similar to survivors (30–40%). While much research has focused on developing better understanding of poststroke depression in stroke survivors, stroke caregiver depression has received less attention. Available research suggests that characteristics of the survivor such as age, gender, relation to caregiver, mental health, and physical or cognitive deficits correlate with and may be contributing factors for caregiver depression. Knowledge of risk factors for stroke caregiver depression could translate to better screening, management, and prevention, but further investigation is needed.

Objectives: To examine the existing literature and synthesize evidence surrounding survivor characteristics and their association with poststroke depressive symptoms in caregivers.

Methods: Medline, PsychInfo, and CINAHL databases were searched with variations of keywords: “stroke,” “caregiver” and “depression.” Studies analyzing associations between at least one stroke survivor characteristic and caregiver depressive symptoms were included.

Results: Seventeen studies met eligibility criteria. They analyzed a wide range of survivor characteristics. Many survivor characteristics lacked convincing evidence of an association with caregiver depressive symptoms. However, a trend emerged supporting an association between survivor depressive symptoms and caregiver depressive symptoms.

Conclusions: Health-care providers should be aware that depressive symptoms in one member of a stroke survivor-caregiver dyad may indicate risk for depressive symptoms in the other. Screening both individuals may lead to earlier detection and provide information to guide interventions. Knowing risk factors for stroke caregiver depression may improve prevention/management, but further investigation is needed.     

Optimizing stroke systems of care by enhancing transitions across care environments

Stroke affects many aspects of the lives of stroke survivors and their family caregivers. Supporting long-term recovery and rehabilitation are necessary to help stroke survivors adapt to living with the effects of stroke and to help family members adapt to the caregiving role. During recovery and rehabilitation, many elements of the health care continuum are utilized, including emergency response, acute care, inpatient and outpatient rehabilitation, and community and long-term care. With the advent of thrombolytic therapy and the benefits of stroke units, stroke survival and outcomes are improving. As a result, the current emphasis of stroke system improvement is to implement stroke units throughout the developed world. To enhance the patient centeredness of stroke care delivery, an important next phase of stroke system improvement will center on the experiences of stroke survivors and their family caregivers as they move through diverse care environments. The objective of this article was to conduct a scoping review of the literature on stroke transitions to identify the current areas of research emphasis. This article highlights stroke survivors' and family caregivers' experiences with transitions across care environment and some potential strategies to improve those transitions.     

Perception of Recovery Orientation as a Predictor of Clinician Turnover in Community Mental Health Clinics

Turnover in community mental health clinics threaten the delivery of quality behavioral health services; recovery orientation has been shown to be associated with lower levels of burnout but its relationship with actual turnover has not yet been examined. This study aimed to examine the relationship between provider perceptions of recovery orientation and 12-month turnover status among community mental health providers. Secondary data analyses were conducted with data collected from 224 community mental health providers from ten organizations across 14 clinic sites participating in a larger effectiveness-implementation trial. Chi square analyses were used to examine between-site variation in 1-year turnover rates among the ten organizations. Logistic regression was used to examine effects of perceptions of recovery orientation along with known predictors of turnover among community mental health providers. Results revealed no between-site variation in organizational turnover rates. The logistic regression model was statistically significant, χ²(17)?=?47.64, p?<?.0001 and explaining 30% (Nagelkerke R²) of within-site variance and correctly classifying 79% of cases. Perceptions of recovery orientation emerged as the sole significant predictor of 12-month turnover status, with higher levels of recovery orientation significantly associated with lower odds of turnover at 12 months [B?=?.90, p?=?.008, OR?2.47 (95% CI 1.23, 4.82)]. Perceptions of recovery orientation was protective against 12-month turnover status suggesting that a more person-centered and empowering approach to care may improve the provider experience. More research is needed to further understand how recovery orientation can contribute to workforce stability.

     

Do family-oriented interventions reduce poststroke depression? A systematic review and recommendations for practice

Introduction:Up to half of all stroke survivors become depressed. Poststroke depression (PSD) negatively impacts on quality of life and rehabilitation outcomes and increases risk of mortality. Depression is also common in carers, leading to poorer outcomes in survivors. Few stroke patients receive adequate care to support prevention and management of PSD. We aimed to systematically review the evidence regarding the effectiveness of family-oriented interventions to prevent and manage depression after stroke and identify components of effective interventions.

Methods:A systematic review was conducted, adhering to Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines. Eight databases were searched, and relevant journals and reference lists were hand searched. Abstracts were screened for relevance and two authors independently assessed selected full texts against inclusion criteria. Studies were included if they (1) engaged stroke patients and their informal/family caregivers; (2) measured changes in depression due to an intervention; and (3) were available in English.

Results:Twenty-five of 2741 identified citations met the inclusion criteria. Five studies demonstrated significant reductions in depression. Commonalities across effective studies included the delivery of interventions that were structured and multicomponent, actively engaged patients and families, coordinated care, and were initiated soon after a stroke.

Conclusion:Family-oriented stroke rehabilitation may reduce depression in stroke survivors and their family caregivers. More research is required to clarify the effectiveness, feasibility, and acceptability of working with families and patients living with or who may be at risk of PSD.     

Parallel lives: Younger stroke survivors and their partners coping with crisis

This paper presents the data derived from 38 younger stroke survivors (aged 20-49) and their partners, focusing on the ways in which a traumatic event such as stroke impacts differently on the person involved and their partner, and how this may affect their subsequent relationship. Post-stroke recovery is a long-term proposition; 12-15 months post-discharge from hospital, some participants spoke of altered roles, additional responsibility, changed relationships, and communication problems. However, few couples had been offered any form of counselling or psychological support. There appears to be a need for family support and counselling if these families are to survive relatively unscathed.     

Group cognitive behavioural therapy for stroke survivors with depression and their carers

Background: Depression in stroke survivors is common, leads to poorer outcomes and often not treated. A group cognitive behavioural therapy (CBT) program (Brainstorm) for stroke survivors with depression, and their carers has been running as part of usual care since 2007.

Objective: To evaluate the implementation and acceptability of Brainstorm, a closed group intervention consisting of up to 10 sessions of education, activity planning, problem solving and thought challenging.

Methods: Participating stroke survivors and their carers complete assessment measures at baseline, post-treatment and 1-month and 6-months follow-up. A mixed models for repeated measures data was conducted with depression and anxiety scores for stroke survivors (Beck Depression Inventory-II; Hospital Anxiety and Depression Scale) and the assessment of depression, anxiety and carer burden for carers. Acceptability was assessed by session attendance and written and open participant feedback upon completion of the program.

Results: Forty-eight community dwelling stroke survivors and 34 carers attended Brainstorm, with a median attendance of 88% of sessions. Follow-up assessments were completed by 77% (post-treatment), 46% (1-month) and 38% (6-month) of stroke survivors. Stroke survivors’ depression scores decreased from baseline to post-treatment (p<.001); maintained at 1-month (p<.001) but not at 6-month (p=.056). Anxiety scores decreased between baseline and 1-month (p=.013). Carer burden, depression and anxiety scores at 1-month and 6-month follow-up, for carers, were all reduced when compared with baseline (p<.05).

Conclusion: The Brainstorm group intervention for depression in stroke survivors appears to have been effectively implemented and is acceptable to stroke survivors and carers.     

Serving Veterans in their Communities: Evaluation of an Online Resource for Behavioral Health Care Providers

Many veterans receive behavioral health care services from providers in their communities. The Community Provider Toolkit (the Toolkit) is a website developed by the National Center for PTSD and the Department of Veterans Affairs intended to provide community mental health care providers with key veteran-focused educational resources. This mixed-methods study examined the potential impact of the Toolkit on provider knowledge and behaviors. Sixty-four clinicians in the community who currently or plan to provide services to veterans were surveyed. The majority of providers found the website useful and easy to navigate. After visiting the site, many providers found additional online and educational resources that they would add to a hypothetical treatment plan. Forty-five providers completed a 1-month follow-up survey focused on use of the Toolkit. Results indicate that the Toolkit may be a valuable tool for increasing provider knowledge about veteran-specific resources.

     

Insomnia and health-related quality of life in stroke

Abstract

Background:

Insomnia is a common complaint in stroke survivors. Insomnia after stroke is correlated with physical disability, dementia, anxiety, depression, and fatigue. However, the influence of insomnia following stroke on health-related quality of life (HRQoL) has not been investigated.

Objectives:

The current study aimed to examine the effect of insomnia on HRQoL in stroke survivors 3 months after their index stroke over and above confounding variables.

Method:

Three hundred and thirty-six patients were recruited from the acute stroke unit in a regional hospital in Hong Kong. Insomnia was ascertained by a single item on a locally validated, seven-item insomnia questionnaire. HRQoL was measured by the total score and the 12 domain scores of the Stroke Specific Quality of Life (SSQoL) scale. Demographic and clinical characteristics were obtained using the following scales: National Institutes of Health Stroke Scale (NIHSS), Barthel Index (BI), Mini-Mental State Examination (MMSE), and Geriatric Depression Scale (GDS).

Results:

Forty-four percent of stroke survivors reported experiencing insomnia in the past month; they were more likely to be female and to have a higher GDS score. The insomnia group had significantly lower overall SSQoL, energy and thinking scores after adjusting for sex, BI, and GDS scores.

Conclusion:

The findings show that stroke survivors who experienced insomnia had a reduced overall HRQoL and were impaired in the energy and thinking domains of HRQoL. Early screening for sleep disturbance would be beneficial to prevent later development of post-stroke insomnia. Pharmacological and non-pharmacological interventions are suggested to improve HRQoL in stroke patients with insomnia.     

Theory-driven development of a mobile phone supported intervention for adolescents with perinatal depression

Purpose

This paper describes the design of a theory-informed pragmatic intervention for adolescent perinatal depression in primary care in Nigeria.

Methods

We conducted Focus Group Discussions (FGDs) among 17 adolescent mothers and 25 maternal health care providers with experience in the receipt and provision of care for perinatal depression. The Consolidated Framework for Implementation Research (CFIR) was used to systematically examine the barriers and facilitators affecting adolescent mothers' use of an existing intervention package for depression. The Theoretical Domain Framework (TDF) and the Capability, Opportunity, Motivation, Behaviour (COM-B) model were used to analyze the results of the data across the five CFIR domains.

Results

FGD analysis revealed that care providers lacked knowledge on approaches to engage young mothers in treatment. Young mothers had poor treatment engagement, low social support, and little interest in parenting. A main characteristic of the newly designed intervention is the inclusion of age-appropriate psychoeducation supported with weekly mobile phone calls, to address treatment engagement and parenting behaviours of young mothers. Also in the outer setting, low social support from relatives was addressed with education, “as need arises” phone calls, and the involvement of "neighborhood mothers”. In the inner settings, care providers’ behaviour is addressed with training to increase their capacity to engage young mothers in treatment.

Conclusion

A theory-based approach helped develop an age-appropriate intervention package targeting depression and parenting skills deficit among perinatal adolescents in primary maternal care and in which a pragmatic use of mobile phone was key.

     

What are the correlates of cognition and participation to return to work after first ever mild stroke?

Abstract

Background:

The percentage of working age people with mild stroke has risen. Evidence indicates that even mild stroke impact cognition, executive functioning, and daily functioning, consequently affecting participation, quality of life (QoL) and return to work (RTW).

Objectives:

(1) Compare cognition, participation and QoL between people 3 months post-mild stroke who RTW and those who did not; and (2) To determine the correlates of these variables to RTW of participants 3 months post-stroke.

Methods:

We visited at home 163 stroke survivors (117 men, 46 women) 3 months post-mild stroke ranging from 50 to 89 years. Participants who returned to work (n?=?114) and those who did not (n?=?49). Data collection at home included measures for cognitive status (MoCA), executive functions (EFPT, DEX), depression (GDS), participation (RNL), and QoL (SIS recovery).

Results:

Significant differences were found between RTW participants and those who did not RTW in measures of cognition, depression, participation and QoL (t?=?2.36 to ??5.62, P?<?0.022–0.001). No difference was found on age or gender. Stepwise regression showed that significant correlates of RTW were participation (RNL), executive functions (EFPT), and QoL (SIS recovery).

Conclusions:

To enable RTW after mild stroke, participation, executive functions and QoL must be considered in planning interventions.     

Carers' experiences of accessing and navigating mental health care for older people in a rural area in Australia

Objectives: Mental health care for older people is primarily delivered in the community and is largely dependent on informal carers. Mental health policy encourages partnerships between carers and service providers to facilitate service access, coordination and positive experience of care. However, carers often lack information and support from services, with the potential for carer burden, and negative impacts on their own health and capacity to fulfil caring tasks. This paper explores rural carers' experiences of accessing care from a range of services for older people with mental health problems.

Method: The Pathways Interview Schedule was used to facilitate 9 in-depth care journey interviews with 11 carers of older people with a mental health problem. Interviews explored their journeys to and through mental health, aged care, primary care and social care services. Framework analysis was used to explore carers' experiences and perceptions of care with a focus on access enablers and barriers.

Results: Carers had a significant role in navigating services and operationalising care for their relative. Enablers to accessing care included carer knowledge and workers actively involving carers in planning. Barriers included carer mental health literacy, consumer and carer readiness for services, and worker misinterpretation of confidentiality and privacy laws.

Conclusion: Carers should be considered key partners in mental health care planning that crosses service sectors. For this to occur, changes are required at the worker level, including increased communication between mental health workers and carers, and the service level, involving training for staff in interpreting confidentiality and privacy policy.     

The measure of stroke environment (MOSE): development and validation of the MOSE in post-stroke populations with and without aphasia

Objectives. The purpose of this paper is to present the development and psychometric properties of a new environmental measure that identifies barriers and facilitators in receptivity, physical environment and communication for post-stroke populations, including survivors with aphasia.

Methods. The Measure of Stroke Environment (MOSE) was developed using information from semi-structured interviews and three pilot studies. Reliability and validity were assessed in 43 post-stroke participants.

Results. The MOSE contains 47 items across 33 questions in three domains (receptivity, physical environment, communication). Internal consistency reliability was high (.83 to .85) across each domain and over the entire assessment (.91). Convergent validity showed moderate correlation with the Stroke Impact Scale (.33 to .37), the National Institute of Health Stroke Scale (-.31 to -.46) and the Boston Diagnostic Aphasia Examination (.55 to .61). Persons with aphasia had significantly lower scores on the communication domain. Stroke survivors with (26% overall difficulty) and without aphasia (31% overall difficulty) continue to experience difficulty ≥ 2 years post-stroke.

Discussion. The MOSE offers a brief, reliable and valid assessment of environmental barriers and facilitators to participation for post-stroke survivors reintegrating into their communities. Stroke survivors with very mild deficits continue to experience barriers from the environment many years post-stroke. These barriers are not typically identified during the rehabilitation process but persist post-reintegration.

Conclusion. The MOSE is able to determine how frequently a stroke survivor faces challenges in their environment and how that impacts his or her participation.     

Anxiety and depression in incident stroke survivors and their carers in rural Tanzania: A case-control follow-up study over five years

AimsTo quantify the extent and nature of anxiety and depression in a representative cohort of stroke survivors and their carers in rural Tanzania.DesignA cross-sectional design was used and stroke cases were followed up at 6–60 months post-stroke. Levels of anxiety and depression in stroke survivors, their carers (for physically dependent stroke survivors) and age- and sex-matched controls were assessed using the hospital anxiety and depression (HAD) scale. Other data collected included age, sex, time elapsed since stroke, quality of life, cognitive function, level of disability and socioeconomic status.ResultsLevels of depression seen in our cohort of stroke survivors (53.0%) are high compared to data from the developed and developing world. Anxiety levels (21.6%) are similar to published data. Stroke survivors (n = 58, full data set n = 51) and carers (n = 27) were significantly more anxious than controls (n = 58), whereas levels of depression were similar across all three groups. High stroke survivor HAD scores correlated with lower scores in physical health, psychological health and environment sections of the WHOQOL-Bref. Increased carer anxiety and depression were associated with reduced informant-reported levels of cognitive function in stroke survivors.ConclusionsTo our knowledge this is the first long term study of incident stroke cases in sub-Saharan Africa which has investigated the psychological health of stroke survivors and their carers. Our study highlights the growing need to develop community rehabilitation services in the developing world, which address both physical and psychological morbidity.