Caregiving problems and feelings experienced by family caregivers of stroke survivors the first month after discharge

The purpose of this study was to identify the major problems and associated feelings experienced by family caregivers of stroke survivors during the first month after returning home. Safety, difficulty in managing activities of daily living, and cognitive, behavioral and emotional changes of stroke survivors (for example, mood swings, lack of motivation, forgetfulness and memory loss, depression and calling the caregiver often) were the three most common problems experienced by caregivers during the first month. Other problems were loss of caregiver independence, confinement, tiredness and inadequate time to do caregiving tasks as well as managing stroke survivor physical symptoms, for example, pain, not eating and skin problems. The first month of caregiving is very dynamic and distressful for caregivers of stroke survivors and telephone contacts appear to be beneficial in assisting caregivers to cope with the caregiving process.     

Efficacy of behavioral interventions for dementia caregivers

Behavioral symptoms of Alzheimer's disease, particularly agitation, appear to be a major contributing factor to the emotional distress exhibited by family caregivers. Psychosocial interventions have been shown to reduce caregiver emotional distress, but few studies have examined the efficacy of these interventions with caregivers exposed to high levels of dementia-related behavioral symptoms. The purpose of this study is to test the efficacy of a caregiver skill building intervention in reducing emotional distress to agitated behaviors of care recipients. This study analyzed data from a subgroup of caregivers who participated in a larger randomized clinical trial (N = 295). Data from 143 caregivers of family members with baseline agitated behaviors indicate that the skill building intervention was more effective than an information and support oriented comparison condition in reducing emotional distress over an 18-month period. These findings indicate that dementia caregivers exposed to agitated behaviors can benefit from psychosocial interventions, particularly those aimed at building behavioral management skills.     

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.     

Well-being in informal caregivers of survivors of acute respiratory distress syndrome

OBJECTIVE: With limited community services, the complex rehabilitation period after critical illness is often the responsibility of family members who, as a result, may experience negative health outcomes. The objectives of this research were to a) identify aspects of the caregiving situation that are associated with caregivers' experiences of emotional distress and psychological well-being; and b) compare health-related quality of life of informal caregivers to survivors of acute respiratory distress syndrome (ARDS) with age- and gender-matched population values. DESIGN: Cross-sectional survey of informal caregivers to ARDS survivors. SETTING: Toronto, Ontario, Canada. PATIENTS: Informal caregivers were individuals who were primarily responsible for providing and/or coordinating ARDS survivors' posthospital care and were not paid to do so. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: The dependent variables were emotional distress, psychological well-being, and health-related quality of life. They were evaluated by the Center for Epidemiologic Studies Depression Scale, the Positive Affect Scale, and Medical Outcomes Study Short Form 36, respectively. Independent variables included severity of illness indicators, patient depression (Beck Depression Inventory II), aspects of the caregiving experience (care provided, lifestyle interference, personal gain), and psychosocial resources (mastery and social support). Caregivers experienced more emotional distress when they experienced more lifestyle interference, had lower levels of mastery, and were caring for ARDS survivors with more depressive symptoms (F3,42 = 15.69, p < .001, adjusted R = .50). In contrast, caregiver psychological well-being was associated with personal gains as a result of providing care and having more mastery and social support (F4,41 = 9.40, p < .001, adjusted R = .43). Caregivers reported poorer health-related quality of life across all domains of the Medical Outcomes Study Short Form 36 compared with age- and gender-matched population values. CONCLUSIONS: Informal caregivers experience negative health outcomes that persist almost 2 yrs after ARDS. New approaches, such as family-centered rehabilitation, caregiver education, improved respite, and home care, may benefit informal caregivers.     

Family caregivers' assessment of symptoms in patients with advanced cancer: concordance with patients and factors affecting accuracy

The purposes of the study were to examine the concordance between patients' and family caregivers' assessments of patients' symptoms, and to identify demographic and psychosocial factors that affect levels of agreement. Sixty-six patients with advanced cancer receiving palliative care, and their primary, informal caregivers assessed patients' symptoms using the Memorial Symptom Assessment Scale (MSAS). Levels of agreement for individual symptoms ranged from poor to excellent (interclass correlation coefficient 0.07-0.75). Analysis of the group means using paired t-tests revealed significant differences for the MSAS subscales (psychological, physical, and general distress index), and for four of the 12 physical symptoms and five of the six psychological symptoms. The magnitude of the observed differences indicated a small to moderate bias for caregivers to overestimate, which was more marked for psychological than for physical symptoms. A number of factors associated with the caregiver (particularly the emotional state, the burden of providing care, and male gender) and the patient (the perception of being a burden to others) were significantly correlated with levels of disparity on some measures. The findings are consistent with the growing body of literature on the validity of proxy respondents' assessments of patients' symptoms.     

Caregivers' emotional well-being and their capacity to learn about stroke

This study examines the effects of distress on the capacity of informal caregivers of stroke patients to absorb information about stroke and caregiving. Thirty-seven caregivers took part in a stroke seminar. Minor psychiatric symptoms were related to caregivers' knowledge prior to the seminar, with the more emotionally distressed being the least knowledgeable. The emotional state of the caregivers, however, did not affect how much they learnt. Knowledge after the seminar was best predicted from pre-seminar knowledge and age. Older caregivers were less well-informed afterwards, although they did not differ significantly from younger caregivers in their scores initially. These findings do not discount the possibility that emotional carers are too shocked to take in information from hospital staff at the time of admission. The data do demonstrate that, given time to accept the caregiving role, emotional carers are receptive to learning about stroke and the stroke patient's needs.     

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.     

Coping with newly diagnosed upper gastrointestinal cancer: a longitudinal qualitative study of family caregivers’ role perception and supportive care needs

Background

Family caregivers of patients with poor prognosis upper gastrointestinal (GI) cancers are at high risk of experiencing psychological distress and carer burden. The early postoperative period is a time of high patient care needs and transition of care, with carers new to the caring role. This study aimed to explore the experiences of family caregivers of people diagnosed with upper GI cancer after surgical intervention to (1) identify their unmet supportive care needs and (2) investigate how family caregivers perceive their role during this time.

Methods

Family caregivers of newly diagnosed postsurgical upper GI cancer patients were recruited. Semi-structured telephone interviews were conducted at 3 weeks and 3 months post-surgery. Analysis involved a constant comparative approach. Sampling was discontinued when information redundancy was achieved. Fifteen family caregivers participated in the first interview and eight agreed to a second interview.

Results

Family caregivers reported significant information and support needs. Family caregiver distress was exacerbated by a lack of patient care knowledge. Access to support was limited by caregivers’ lack of understanding of the health system. Family caregivers view their role as part of their family responsibility.

Conclusions

This study provides new insight into the supportive care needs of family caregivers of upper GI cancer patients and the impact of unmet need on the emotional well-being of family caregivers. These results will inform future supportive care service development and intervention research aimed at reducing unmet supportive care needs and psychological distress of family caregivers of patients with poor prognosis upper GI cancer     

Personality of the caregiver influences the use of strategies to deal with the behavior of persons with dementia

Personality of family caregiver is an important factor influencing the caregiver's burden, depression and distress. We now hypothesized that the personality is associated with specific strategies used by family caregivers to deal with the behavioral and psychological symptoms of demented relatives (BPSD). Participants were 98 consecutive persons with dementia and their family caregivers. Assessments included: Personality (NEO-FFI), Burden (ZBI), Depression (CES-D), Cognitive Function (MMSE), BPSD (NPI), Distress (NPI-D), and an open question to identify the strategies used by caregivers when faced with BPSD. Caregivers used different strategies to cope with their relatives' behavior: avoiding conflict; confronting; reassuring; orienting; responding coercively; distracting; colluding; medicating and restricting the movements. Extraversion was the only dimension of caregiver's personality that determined the use of caregiver strategies to deal with BPSD. Extroverted caregivers used the “confronting” strategy less often. Caregiver's personality should be taken into account when designing adapted intervention programs.     

脑卒中患者家庭照顾者的应对方式和抑郁状况的调查

目的探索脑卒中患者家庭照顾者应对方式和抑郁水平的相关因素和预测因子。方法采用立意取样方法，选择92名患者及他们的照顾者完成调查问卷。结果脑卒中照顾者主要采用计划、正性重构、接受和积极应对四种应对方式；44．6％的照顾者有不同程度的抑郁症状；住院时间、功能和认知状况、家庭收入与照顾者的抑郁显著相关；应对方式中拒绝、自责、计划和信教与照顾者的抑郁显著相关；拒绝、计划两种应对方式和患者的功能状况是抑郁的预测因子。结论照顾者常采用适应性应对方式，但是他们的抑郁水平却很高。因此，应加强对家庭照顾者的关注。     

Family caregivers of patients with frontotemporal dementia: An integrative review

ObjectivesThe purpose of this integrative review is to: (1) identify the characteristics of family caregivers of patients with frontotemporal dementia, (2) explore the impact of providing care on family caregivers’ health and well-being, and (3) identify coping strategies used by family caregivers.BackgroundFrontotemporal dementia is thought to be the second most common form of dementia after Alzheimer's disease. Family caregivers of patients with frontotemporal dementia face unique challenges due to its early onset, behavioral symptoms, and slow progression of decline. However, there is a dearth of research evaluating the health and wellbeing of family caregivers of patients with frontotemporal dementia.Design and data sourcesAn integrative review was conducted using the Whittemore and Knafl methodology. An electronic search of the literature was conducted using four electronic databases: PubMed, Embase, CINAHL, and Web of Science. The Crowe Critical Appraisal tool was used to evaluate the quality of the selected articles.ResultsFindings of 11 articles informed this integrative review. Family caregivers of patients with frontotemporal dementia identify behavioral disturbances as most troubling. Spouses and female caregivers experience greater caregiver burden, distress, increased rates of depression, as well as decreased sleep related to behavior disturbances. Though less explored, providing care to those with behavioral disturbances may also impact caregiver physical health. Additionally, female caregivers are most likely to employ coping strategies, most commonly, adaptation and reframing. Effective interventions to reduce family caregiver burden are poorly understood but family caregivers suggest education and internet-based support groups are most helpful.ConclusionsFamily caregivers of patients with frontotemporal dementia experience significant distress, which impacts their health and wellbeing. It is important for healthcare providers who care for patients with frontotemporal dementia to recognize the unique needs of family caregivers. Future research should focus on examining interventions and strategies to reduce caregiver burden.     

Factors Associated With the Emotional Distress of Women Family Members of Adults With Serious Mental Illness

Women family members of adults with serious mental illness are at great risk for emotional distress. This study examined associations between characteristics of 60 women (age, race, and education), their relatives with mental illness (age, diagnosis, and years since diagnosis), and the family situation (relationship, living arrangements, and care provided) and symptoms of emotional distress. Depressive symptoms were greater among those with younger, non-sibling relatives. Anxiety was greater among Caucasians and those with a recently diagnosed family member, particularly bipolar disorder. Anger was associated with providing direct care. The findings are informative for tailoring interventions to minimize emotional distress in future family caregivers.     

Psychological distress and quality of life of palliative cancer patients and their caring relatives during home care

Purpose

Palliative patients and their family caregivers were interviewed at the beginning of home care in personal interviews at home in regard to their psychological distress as well as their quality of life.

Methods

Quality of life was collected with the palliative module EORTC QLQ-C15-PAL (patients) and the Short Form-8 Health Survey (caregivers). The psychological distress was assessed using the Hospital Anxiety and Depression Scale, the extent of social support with the Oslo 3-items social support scale. Two multiple regression models were employed to examine factors associated with psychological distress. Data from 106 palliative patients (39.6 % female) and their family caregivers (67.9 % female) were included in the analysis.

Results

Every fourth patient had clinically relevant anxiety levels and half of the palliative patients had clinically symptomatic depression scores. The main symptoms of the patients were: fatigue, loss of appetite, pain, and shortness of breath. Patients’ and caregivers’ anxiety and depression scores were significantly correlated (anxiety r?=?0.386, depression r?=?0.416). Thirty-three percent of caregivers suffered from high anxiety and 28 % from depression. Spousal caregivers had higher psychological distress than other caregivers. Other relevant factors for higher distress were high financial burden and low social support. There was hardly any family member receiving professional psychological support.

Conclusions

In palliative patients, depressive symptoms should not be judged as a normal attendant of the terminal illness situation. Instead, patients should be referred to appropriate support services for pharmacological or psychological treatment. Spousal caregivers and caregivers who are socially not well integrated are in particular need of support. Attention to the financial burden of family caregivers is also very important. Due to the existing correlation between the psychological situation of palliative patients and their caring relatives, couples must be considered an emotional system rather than just two individuals.     

Time and difficulty of tasks provided by family caregivers of stroke survivors.

Family caregivers of stroke survivors are at risk for negative health outcomes such as depression, psychosocial impairments, and even mortality as a result of providing care. Shortened hospital stays have contributed to the urgent need for caregivers to manage difficult and time-consuming tasks required for the care of stroke survivors in the home setting. The purposes of this study were to (a) identify which tasks were perceived as most time-consuming and difficult, (b) determine which of these tasks were most predictive of mood and other negative caregiver outcomes, and (c) evaluate the psychometric properties of the Oberst Caregiving Burden Scale (OCBS) as a measure of tasks in stroke caregivers. A cross-sectional design was employed using mailed questionnaires from 116 family caregivers of stroke survivors featuring the OCBS, the Profile of Mood States Short Form, and the Bakas Caregiving Outcomes Scale. The tasks perceived as most time-consuming and difficult, which also were predictive of mood and other negative caregiver outcomes, were managing finances, managing behaviors, and providing emotional support. Strong psychometric properties of the OCBS were found at both item and subscale levels. Developing an individual profile using the OCBS items may help to target individual support interventions for caregivers. Suggested interventions include referring caregivers to resources for tasks that fall outside the scope of nursing practice, supporting caregivers with tasks such as providing emotional support or managing behavioral problems, and encouraging caregivers to seek care for their own physical, emotional, or social needs.     

Distress and quality of life concerns of family caregivers of patients undergoing palliative surgery

There has been limited research in the field of palliative care and even far less focus on the area of palliative surgery. Although patient needs are paramount, family caregivers require information and support at the time surrounding surgery for advanced disease. The aim of this prospective cohort study of family caregivers of patients with advanced malignancies was to measure the impact of palliative surgery on dimensions of quality of life (QOL) for these family members. Family caregivers completed assessment tools preoperatively and at approximately 3 weeks and 2 and 3 months postoperatively. Parameters of physical, psychological, social, and spiritual QOL were measured on a scale of 0 (poor) to 10 (good) using the City of Hope QOL-Family instrument. Caregivers recorded their general distress on the Distress Thermometer using a scale of 0 (none) to 10 (severe). Analysis of the data revealed that family caregivers had disruptions similar to patients in physical, psychological, social, and spiritual dimensions of QOL. Findings suggest that caregivers should be assessed for distress and QOL concerns both before and after surgery for patients with advanced malignancies. Although caregiver concerns cannot always be eradicated, resources and interventions to support family caregivers are vital to improving QOL.     

Perceptions of patients' self-efficacy for managing pain and lung cancer symptoms: correspondence between patients and family caregivers

This study examined the degree of correspondence between lung cancer patients and their family caregivers in their perceptions of the patients' self-efficacy for managing pain and other symptoms of lung cancer, and the association of this correspondence to demographic, disease, and psychosocial variables. Thirty patients who were newly diagnosed with lung cancer and their primary family caregivers completed telephone interviews assessing the patient's symptoms, the patient's self-efficacy for managing symptoms, the quality of the relationship between the patient and caregiver, patient and caregiver psychological distress, and caregiver strain. Although patients and their caregivers showed a moderate degree of agreement in their perceptions of the patient's self-efficacy for managing pain and other symptoms, there was considerable variability in the degree of congruence. Factors that contributed to lower levels of congruence included low patient-rated self-efficacy, female gender of the patient, high patient psychological distress, and high caregiver strain. Caregivers were about evenly split in their tendency to overestimate versus underestimate the patient's self-efficacy. A poorer quality of relationship between the caregiver and the patient (as rated by the patient), high levels of patient-rated symptoms, and high levels of caregiver strain were associated with caregivers overestimating patient self-efficacy.