Informal stroke rehabilitation: what are the main reasons of Thai caregivers?

The aim of this study was to identify the reasons for the provision of informal rehabilitation services at home to stroke relatives by Thai caregivers. Twenty primary informal caregivers were individually interviewed at their homes by using semistructured questions elaborated by the researchers. All interviews were recorded on audiotape. Content analysis was used to determine the reasons for performing informal rehabilitation. Four major reasons, (i) biological, (ii) psychological, (iii) social, and (iv) spiritual, emerged from our content analysis to maintain for the stroke victims the highest possible quality of life. Improvement and prevention of further deterioration were the two main concepts in the biological and psychological reasons expressed by these Thai caregivers, whereas maintaining human relations and usual social activities were the two main considerations in the social reason. The main concepts in the spiritual reason were respecting the religious beliefs, superstitions, and culture of the caregivers or patients, improving patients' empowerment, and improving caregivers' satisfaction. These four reasons encompassed the biological, psychological, social, and spiritual aspects of a holistic approach to the definition of health. The health professional in Thailand should encourage stroke caregivers to continue providing informal rehabilitation services for their stroke relatives, as it might sustain the well being of stroke survivors during their stay at home.     

Informal stroke rehabilitation: what do Thai caregivers perform?

Our aim was to explore the informal rehabilitation activities performed by Thai caregivers for stroke survivors at home. Twenty primary informal caregivers were individually interviewed, using semi-structured questions developed by researchers, to investigate the informal rehabilitation activities provided for the stroke survivors at their homes. All interviews were audiotape recorded and some pictures of rehabilitation activities were taken during data collection. The data collected underwent content analysis. Findings revealed three major categories of rehabilitation activities - biological, psychological and social rehabilitation. Biological rehabilitation was the most frequently undertaken by all Thai caregivers. Several methods were used to rehabilitate the stroke survivors in each category, based on the scientific background and cultural beliefs of the caregivers and survivors. In conclusion, informal caregivers always have in mind all activities, thus providing a holistic approach for informal rehabilitation. This plays a very significant role in minimizing residual disabilities, preventing related complications and sustaining the well-being of stroke survivors. Health professionals should motivate caregivers of stroke survivors to maintain informal rehabilitation activity at home. Additionally, health care providers should be concerned about the coordination between institutional and informal rehabilitation in order to better optimize the quality of care provided at home.     

Rehabilitation of the disabled: The role of social networks in the recovery process

This study examines the role of formal and informal intervention systems utilized by the chronically disabled in the process of rehabilitation and recovery. In addition to formal community resources (agents and agencies), the disabled tend to rely on informal social networks (family and peers) as sources of support in the recovery process. The findings presented in this paper focus on the extent to which formal interventions and informal resources are supportive for the disabled and the effect of these support systems on outcome. The analysis is based on empirical data derived from a survey of 950 chronically disabled adults interviewed in a metropolitan community in the U.S.A. Among other findings, the evidence suggests that informal social networks play an important role in the rehabilitation of the disabled. Reliance on informal resources is enhanced in the absence of formal rehabilitation intervention, suggesting alternative modes of social support are actively sought and utilized by the disabled. Furthermore, lay-initiative may constitute another effective resource in the process of recovery. These findings suggest that informal resources are effectively utilized by the disabled, but are not usually identified as part of the formal intervention system in the community.     

On autonomy and participation in rehabilitation

Purpose : To explore the concept of autonomy as a basis for social participation, with particular reference to rehabilitation. Method : A study of relevant literature from the field of rehabilitation, building on theory developed in other fields (ethics, social sciences), and deriving important concepts and strategies for rehabilitation practice. Results : The focus of rehabilitation for people with a chronic disabling condition is shifting from a biomedical to a client-centred perspective. Conceptions of autonomy vary among individuals and cultures, but a crucial distinction can be made between decisional autonomy (the ability to make decisions without external restraint) and executional autonomy (the ability to act as one wishes). The liberal-individualist account of autonomy over-emphasizes physical independence and does not sufficiently recognize the inter-dependency of all people, including those with disabilities. An ethic of care, complementary to the principle of respect for autonomy, should guide the development of rehabilitation strategies to enhance individual autonomy and participation in daily living. For rehabilitation, this entails an attentive attitude, maximizing opportunities for informed choices, taking full account of each person's preferences, needs and social contexts. Conclusions : Autonomy is central to client-centred rehabilitation since it is a pre-requisite for effective participation. It is suggested that autonomy, conceived as a basis for participation, is the ultimate aim of rehabilitation.     

Quality of life and burden of informal caregivers of stroke survivors

Stroke rehabilitation has concentrated on patient-focused intervention, which has reduced the level of disabilities and has increased the number of stroke survivors being managed at home by caregivers. This study was aimed at determining the level of strain experienced by the caregivers of stroke survivors and the quality of life (QoL) of these caregivers. The QoL and caregiving burden among informal caregivers of stroke survivors seen at the physiotherapy outpatient clinic of two hospitals in south-western Nigeria were documented. Participants completed the Personal Wellbeing index for QoL measurement and Modified Caregivers Strain Index for measurement of Caregivers Burden Score. A total of 130 informal caregivers of stroke survivors participated in this study. The mean age of caregivers was 41.1 ± 14.0 years, while that of stroke survivors was 60.4 ± 10.9 years. Among the stroke survivors, 75 (57.8%) were female, whereas 74 (56.9%) of the caregivers were males. The results showed that caregivers' burden was inversely correlated to their QoL (p < 0.001). The lower functional status of the stroke survivors, as recorded by modified Rankin score and Barthel Index, was significantly associated with lower QoL and higher caregiver strain index of the caregivers.     

A meta-analysis of interventions for informal stroke caregivers

The purpose of this study is to examine the effectiveness of the interventions for improving mental health of caregivers of people with stroke by synthesizing individual studies. A meta-analysis was performed to summarize findings of intervention studies of caregivers of elderly stroke patients. Additionally, a sensitivity analysis and a publication bias were tested. The overall mean weighted effect size (MWES) for the four studies is 0.277 (Z = 3.432, p = .001) with a 95% CI .118 to .435 (N = 718) indicating that the intervention was effective in improving the mental health of informal stroke caregivers. The MWES for the education program was 0.354 (Z= 2.613, p < .01) and for the support program was .234 (Z = 2.335, p= .02). The MWES for the Europe study was .219 (Z= 2.613, p < .01) and for the United States was .922 (Z = 3.287, p = .001). The results show that overall interventions improved mental health of informal stroke caregivers. The small number of studies included in the meta-analysis limits the generalizability of results while supporting the need for more research in this area.     

Decision analysis as a tool to support an analytical pattern-of-reasoning

Abstract Decision analysis is offered as a tool to aid nurses' decision-making in complex and troublesome situations where there are mutually exclusive actions and time is available for deliberation. Decision analysis can be formal or informal. Formal decision analysis provides a structure for representing the decision situation and a mathematical procedure for prescribing the alternative action that is most consistent with what is known and what one values. Informal decision analysis uses the concepts and sometimes the structure of decision analysis, but usually does not include the mathematical calculations. In the present paper, the authors illustrate how formal and informal decision analysis might be used by nurses to: (i) enhance their own decision-making; (ii) assist patients or family caregivers with decision-making and; (iii) promote informed health care policy development. Finally, the advantages and limitations of decision analysis are discussed.     

The impact of gender regarding psychological well-being and general life situation among spouses of stroke patients during the first year after the patients' stroke event: a longitudinal study

BACKGROUND: The informal caregivers perceive lack of choice to take on the role of caregiving, receiving little or no preparation for the caregiving role at home. The typical informal caregiver is female, either a spouse or adult child of the care recipient, and seldom shares the responsibilities of caregiving with other family members. The spouses worry about the ill relative, but also about what consequences the disease might have for their own life. The worries seem to vary with gender and disease. There are, to our knowledge, few previous longitudinal studies that have focused on gender differences among spouses of stroke patients. OBJECTIVES: To explore gender differences among spouses in perceived psychological well-being and general life situation, during the first year after the patients' stroke event. DESIGN: Longitudinal study with three assessments regarding psychological well-being and general life situation during 1 year. SETTINGS: The study took place at a stroke ward, Stockholm, Sweden. PARTICIPANTS: Consecutively 80 female and 20 male spouses of stroke patients admitted to a stroke unit participated. METHODS: Data were analysed using analyses of variance. RESULTS: Female spouses have a negative impact on psychological well-being, while male spouses have a lower occurrence of emotional contacts in their social network. Consistently, the female spouses reported lower quality of life and well-being than the male spouses. CONCLUSIONS: This study generates the hypotheses that there are gender differences among spousal caregivers of stroke patients; female spouses are more negatively affected in their life situation due to the patients' stroke event than the male spouses. It is important to take the individual differences under consideration when designing a nursing intervention, to meet the different needs and demands of male and female caregivers. The interventions should focus on individual support, so that the caregivers can adapt to their new role and be comfortable and effective as informal caregivers.     

Informal and formal support for caregivers of a demented relative: Do gender and kinship make a difference?

Gender and kinship were examined with regard to caregivers' use of informal and formal support and to two models of support (substitution or supplementation). Three groups of caregivers of a demented relative living at home–husbands, wives, and adult daughters–were compared on measures of both informal and formal support. The gender hypothesis deals with the similarities among caregivers of the same gender with respect to support. The kinship hypothesis refers to the similarities among caregivers having the same kinship with the carereceiver. The gender hypothesis was confirmed for informal informational support while the kinship hypothesis was supported for informal conflictual support. For most of the comparisons, the three groups of caregivers shared more similarities than differences. The interchangeability between informal and formal support seems to fall under the perspective of kinship because the daughter group is the only one where a model of supplementation was observed. ©1995 John Wiley & Sons, Inc.     

The nature of social support as experienced by women treated for breast cancer*

This paper deals with one aspect of a major study, namely the meaning of social support, a concept loosely used in research and by practitioners. Grounded theory was adapted and discourse analysis used to retrospectively analyse data collected for a previous study exploring health visitors' support of patients with breast cancer. Patients' diagrams of their social networks illustrated their perceptions of support and strain. Respondents indicated that they faced six threats to their identities associated with the breast cancer experience and perceived social support to be actions/attitudes from formal or informal sources which maintained identities for many respondents who wanted to ‘get back to normal’ in their relationships and in their work. Women also needed support to accept identity changes, for example, adapting to an uncertain future. This paper focuses on the effects of informal support on identity. Respondents identified seven main types of informal support from various sources. Larger social networks were more likely to provide the different types of support needed. However, social intimacy of close relationships maintained important aspects of women's identities and were indeed part of their identities. Respondents' social contacts sometimes perceived breast cancer as threatening to their own identities and were consequently unsupportive. Informal support was vital for respondents copies with breast cancer. Nurses should help patients maintain and create their own informal support during illness.     

Informal caregivers' needs on discharge from the spinal cord unit: analysis of perceptions and lived experiences

Purpose: Spinal cord injuries (SCI) are one of the most complex and disabling diseases, implying severe consequences on aspects of life of people affected by SCI and their caregivers. The aim of our study was to explore the situation of informal caregivers of persons with SCI when discharged home from a SCI Unit, in relation to needs, emotional experiences, difficulties and subsequent reactions to discharge. Methods: A purposive sample of 11 caregivers were interviewed on patients' discharge home from the Spinal Injury Care Unit and at 6 months. The semi-structured interviews were analyzed using a qualitative phenomenological methodology as described by Giorgi. Results: Five main themes emerged from the caregivers' experiences including their implicit and explicit needs. Problems concerning communication with healthcare professionals and the need for an adequate multidisciplinary taking charge of caregivers in order to support their new role emerged within all the themes. Conclusions: Results suggest that greater caregiver involvement in the rehabilitation process and their preparation for discharge are required. Communication with healthcare professionals needs to be enhanced. It would be useful to organize follow-up visits after discharge to assess intervention effectiveness.

• Implications for Rehabilitation

• Understanding the importance of discharge from the spinal cord unit as a meaningful step in the rehabilitation path for both patients and their informal caregivers.

• Orientating healthcare professionals towards a better caregiver involvement during the rehabilitation process.

• Promoting rehabilitation interventions addressed to the patients and their caregivers concerning supportive communication strategies as well as providing meaningful information, psychological and social support, educational intervention besides the physical aspects of care.

• Understanding SCI survivors caregivers' needs can assist healthcare professionals in planning and improving taking charge of this core aspect of nursing care.

     

Stroke survivors' behavioral and psychologic symptoms are associated with informal caregivers' experiences of depression

OBJECTIVE: To determine the impact of stroke survivors' behavioral and psychologic symptoms (BPS) on informal caregivers' experience of depression in the context of the caregiving situation. DESIGN: Cross-sectional survey using a structured quantitative interview. SETTING: Rehabilitation facility outpatient clinic, tertiary care facility outpatient clinic, and community care organizations. PARTICIPANTS: Ninety-four informal caregivers to stroke survivors completed standardized measurement instruments. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Measurement instruments included the Center for Epidemiological Studies Depression Scale, Brain Impairment Behavior Inventory-Revised, Caregiver Assistance Scale, Caregiving Impact Scale, and Mastery scale. RESULTS: A substantial percentage (44.7%) of caregivers were at risk of clinical depression. Caregivers experienced more depression symptoms when they cared for stroke survivors exhibiting more BPS of memory and comprehension difficulties, provided less assistance, experienced more lifestyle interference, and had lower mastery (F(5,85)=26.02, P<.001, adjusted R(2)=.58). CONCLUSIONS: BPS exhibited by stroke survivors contribute to informal caregivers' experience of depression. These results can assist rehabilitation professionals to identify informal care providers who are at greater risk of experiencing emotional distress and, therefore, may benefit from intervention.     

Early discharge to therapy-based rehabilitation at home in patients with stroke: a systematic review

Abstract

Early discharge and home rehabilitation (EDHR) for stroke patients seems logical as an alternative to rehabilitation in stroke units, as these patients often show impaired ability to perform activities of daily living. The objective of this review is to present the effects of EDHR for stroke patients on health, quality of life and costs, and to describe the physiotherapy provided. Seventeen randomised controlled trials were included, assessed with the PEDro scale and rated using Sackett's rules of scientific evidence. The results showed that EDHR can reduce the length of time spent in hospital. It might improve basic activities of daily living, but is more likely to improve patients' instrumental activities of daily living and quality of life. The context is a core issue for the physiotherapy intervention. Early discharge and home rehabilitation seems to be cost-effective if rehabilitation at home is provided by a multidisciplinary team from a hospital. It is important to consider patients' coping capacities and possible strain on caregivers as contributing factors to the efficacy of EDHR.     

Patient autonomy during rehabilitation: the experiences of stroke patients in nursing homes

This article describes the results of a grounded theory study among stroke patients (N=17, aged 50-85) in rehabilitation wards in nursing homes. Patient autonomy (dimensions: self-determination, independence and self-care) increases during rehabilitation due to patient factors (conditions and strategies of patient) and environmental factors (nursing home and strategies of health professionals and family). During rehabilitation patients are in a state of transition regarding autonomy: patients need support to enhance autonomy, gradually regain autonomy, and thereby need less support. Although facilitating environmental factors were discovered, patients also experienced constraining factors regarding patient autonomy. Health professionals should give more attention to self-determination and independence; the nursing home should offer stroke patients more opportunities to do familiar activities autonomously.     

Stroke: coping strategies and depression among Chinese caregivers of survivors during hospitalisation

Aims and objectives. The main aim of this study was to identify the coping strategies of stroke caregivers, to identify the factors associated with caregivers’ depression and to identify predictors of caregivers’ depression. Background. Stroke has a high incidence in China. Most stroke survivors are accompanied by family caregivers during hospitalisation. However, little is known about these informal caregivers’ coping strategies to the consequences brought on by stroke and their depressive symptoms. Method. A correlation and cross‐sectional design was used and a purposive sample of 92 stroke survivors and their caregivers completed the questionnaires, which were used to describe the demographic of both the caregiver and stroke survivor, coping strategies (the Brief COPE Inventory) and depression of caregivers (the Center for Epidemiologic Studies Depression Scale). Spearman's correlation and multiple stepwise regression analysis were used in data analyses. Results. Several coping strategies (planning, positive reframing, acceptance, active coping, use of instrumental support and humour) were most commonly used by stroke caregivers. The length of hospital stay, stroke survivor's cognitive status and functional status, family income and coping strategies such as (i) denial, (ii) self‐blame, (iii) planning and (iv) religion had significant correlations with caregiver's depression. The best predictors of caregiver's depression were denial, planning and stroke survivor's functional status. Conclusions. This study contributes to our knowledge about the coping strategies and depression level of stroke caregivers on the Chinese mainland. The depression rate is very high during hospitalisation, although these caregivers often had positive coping responses to the stroke event. Many factors were associated with caregivers’ depression. Relevance to clinical practice. Nurses should not only pay attention to stroke survivors but also to their caregivers. To help them adjust well from the stroke consequences and avoid depression, nurses should implement effective interventions.     

The impact of informal caregivers on depressive symptoms among older adults receiving formal home health care

This study evaluated the association between presence and types of informal caregivers and the presence of depressive symptoms among older adults receiving formal home health care (HHC). A secondary analysis of data was conducted using a computerized patient care database, the Outcome and Assessment Information Set. Logistic regression analyses were used to examine the data of 8448 patients aged 65 years or older who had been admitted to an HHC agency from acute care hospitals between January 1, 2002 and June 30, 2002. The outcome variable was the presence of depressive symptoms. The primary predictor variable was the presence and types of informal caregivers. Covariates included demographic variables, health status, length of time enrolled in formal HHC, patient living arrangements, and the frequency and types of care received from informal caregivers. A lower percentage of older adults receiving care from both informal caregivers and a formal HHC agency (13.3%) had depressive symptoms than older adults receiving only formal HHC (14.9%) at the end of a 60-day episode in formal HHC. Older adults without an informal caregiver were more likely to experience depressive symptoms than those with an informal caregiver after a 60-day episode in HHC (odds ratio = 1.229, 95% confidence interval = 1.027-1.471). There was no significant association between the types of informal caregivers and the presence of depressive symptoms.     

Autonomy in stroke rehabilitation: the perceptions of care providers in nursing homes

Twenty-seven health care providers from three nursing homes were interviewed about the autonomy of stroke patients in rehabilitation wards. Data were analysed using the grounded theory method for concept development recommended by Strauss and Corbin. The core category 'changing autonomy' was developed, which identifies the process of stroke patients regaining their autonomy (dimensions: self-determination, independence and self-care), and the factors affecting this process (conditions (i.e. circumstances) and strategies of patients; strategies of care providers and families; and the nursing home). Teamwork on increasing patient autonomy is recommended, which can be stimulated by multidisciplinary guidelines and education, and by co-ordination of the process of changing autonomy.     

Effectiveness of online dementia caregivers training programs: A systematic review

Over the next thirty years, Alzheimer's disease rates will increase alongside global aging. With the anticipated increase in demand, knowledgeable and skilled dementia caregivers will be in need across the long-term care spectrum. This study is a systematic review of online dementia-based training programs for formal and informal caregivers conducted to analyze evidence for using online training programs. We used the Preferred Reporting Items for Systematic Reviews (PRISMA) method. Methodological quality was assessed by the Cochrane Collaboration Back Review Group criteria. No previously published systematic review has analyzed online dementia training programs among both formal and informal caregivers. A systematic search of Web of Science, PsychInfo, and PubMed resulted in a final sample of (N = 19) studies. Results suggest that online interventions improve the condition and preparedness of caregivers, but future evaluations should consider study designs with multiple time points, control groups, and content that is personalized and interactive.     

Use of healthcare, impact on family caregivers and patient satisfaction of rehabilitation at home after stroke in southwest Stockholm

We previously conducted a randomized controlled trial in which early supported discharge from the Department of Neurology at Huddinge Hospital in southwest Stockholm with continuity of rehabilitation at home (n = 41) was compared to routine rehabilitation services (n = 40) for moderately disabled selected stroke patients. No statistical significant differences were found in patient outcome at 3 or 6 months, but a moderately positive effect in the home rehabilitation group was suggested. In the present study we evaluated resource utilization of health and social care, impact on family caregivers during 6 months after acute stroke and patient satisfaction. A 50% reduction in total hospitalization (initial and recurrent) was observed, from 30 days in the routine rehabilitation group to 15 days in the home rehabilitation group (p < 0.001). After discharge, the mean number of home visits in the home rehabilitation group was 12. In total, the routine rehabilitation group had a higher frequency of therapy contacts and daycare in outpatient care. Seventy-eight percent received help from a family caregiver in activities of daily living, yet only 15% had formal home help service. No major differences were found in use of home help service or impact on family caregivers in the form of time devoted to helping the patient or subjective well-being of spouses as per Sickness Impact Profile. Patient satisfaction was in favour of the home rehabilitation group, but a significant difference was only found in active participation in rehabilitation programme planning. In conclusion, early supported discharge with continuity of rehabilitation at home, using goal-directed functional activities based on the patient's personal interests, should be the rehabilitation service of choice for moderately disabled stroke patients fulfilling certain criteria, provided that further evaluation during the first year after stroke reveals no great changes in outcome or resource use. More research into the effectiveness and cost implications of early supported discharge with continuity of rehabilitation at home is needed in other parts of Sweden and in other countries before it can be asserted that the conclusions drawn from this study are applicable elsewhere.     

Self-care needs and practices for the older adult caregiver: An integrative review

Older adult caregivers experience health risks due to the demands of the role, higher prevalence of chronic illness, the aging process, and insufficient time for self-care. Using Whittermore and Knafl's methodology, an integrative review was conducted to explore the self-care needs and practices of older adult caregivers. The terms self-care, caregiver, informal caregiver, carer, family carer, and older adult were used to search the CINAHL, PsychINFO and SocIndex databases and obtain studies published in English between 2010 and 2020. Non-research articles, reviews, mean age of subjects < 50 years, studies focused on formal caregivers were excluded. Fifteen articles met inclusion criteria. Physical activity, stress management, social support, and support resources were identified as self-care needs. Self-care practices included self-advocacy, coping strategies, prioritizing of self, legacy building, and activism. Further exploration is required on how to best support older adult caregivers in fulfilling their caregiving role while promoting their own health.