Depression and grief reactions in hospice caregivers: from pre-death to 1 year afterwards

BACKGROUND: As the US population ages, more and more individuals will find themselves facing the demanding task of caring for terminally ill family members. Yet strikingly little is known about the emotional toll such caregiving exacts from caregivers, or how the stresses and strains of caregiving affect later grief reactions. This study examines the emotional adjustment and grief intensity of bereaved caregivers from their prebereavement (caregiving) baseline through the first year after the death and compares the effects of caregiving and subsequent bereavement on spouses and adult children. METHODS: Forty-eight adult children and spousal caregivers of hospice patients and 36 controls were evaluated shortly before the deaths of their loved ones and again at 2, 7, and 13 months after their deaths. All subjects were administered the Hamilton Rating Scale for Depression, Brief Symptom Inventory, and the Texas Revised Instrument of Grief. RESULTS: Depression and other indices of psychological distress are highest during the caregiving period and during the first few months after the death, before decreasing over the duration of the first year. Many symptoms of grief remain prominent as long as 13 months after the death of a parent or a spouse. There were no differences in intensity of grief, depression or other indices of distress between bereaved children and bereaved spouses. CONCLUSIONS: The magnitude of the stress of caregiving may be underestimated. Depression is at least as likely to emerge in the context of caregiving as it is in the postbereavement period. Therapeutic interventions may need to take into consideration the expected distress associated with caregiving and the chronicity of grief reactions. LIMITATIONS: The large dropout rate, reliance on self-report ratings and demographically homogeneous sample may limit generalizability of findings.     

Psychological distress of caregivers: the mediator effect of caregiving appraisal

This study concerns the role of caregiving appraisal, whether it explains why stressors in the caregiving situation affect caregivers' psychological distress. This putative mediator effect of caregiving appraisal is separately tested for spouse and non-spouse caregivers of demented elderly persons. Caregiving appraisal is operationalized by a measure of pressure from informal care as perceived by the caregiver. For spouse caregivers, perceived pressure explained the association between their caregiving tasks and psychological distress. However, the strong association found between behavioral problems and psychological distress was not explained by perceived pressure in spouse caregivers. Furthermore, results showed clear mediator effects of perceived pressure for associations between stressors (both behavioral problems of the demented elder and caregiving tasks) and non-spouse caregivers' psychological distress. Thus, it is inadequate to focus interventions merely on stressors in the caregiving situation, for non-spouse caregivers in particular. A reduction of perceived pressure from informal care is also needed.     

Problems of caregiving spouses of patients with dementia

Twenty-six caregiving spouses of patients with dementia in the Netherlands were interviewed to better understand their problems and needs. Special attention was paid to the information the caregiver received from their general practitioner. Nineteen caregivers indicated that they received little or no information about the disease and its possible consequences. Furthermore, they experienced many problems, because of the disease and the daily care they provided; eleven caregivers indicated a decrease in social contact, which resulted in further problems. Caregivers who sought professional help at an early stage experienced fewer problems in providing daily care. The results of this project suggest that in future health education policy special attention should be paid to the role of the general practitioner and to the importance of a caregiver's social network.     

The moderating effects of positive appraisal on the burden of family caregivers of older people

This study focused on the moderating effects of positive appraisal of family caregivers of older people on caregiving burden. In Study 1, 16 original items of the Caregiving Burden Scale and 14 original items of the Positive Appraisal Scale were administered 140 caregivers. By factor analysis, the Caregiving Burden Scale was divided into four subscales named: "Restriction of freedom (Kosoku-kan)"; "Wish to give up caregiving (Genkai-kan)"; "Family trouble (Taijin-katto)"; and "Economic restraint (Keizaiteki-futan)". The positive appraisal scale was also divided into three subscales named "Caregiving satisfaction (Manzoku-kan)", "Caregiver's self-growth (Jiko-seicho-kan)", and "Will to continue care-giving (Kaigo-keizoku-ishi)". In Study 2, 306 caregivers completed the Caregiving Burden Scale and Positive Appraisal Scale. The results indicated that; (a) positive appraisal moderated caregiver's wish to give up caregiving ("Genkai-kan"); (b) Caregiving satisfaction ("Manzoku-kan") was more effective than caregiver's self-growth ("Jiko-seicho-kan"); (c) moderating patterns varied by the combination of stressor, burden and positive appraisal.     

Psychological distress of caregivers: moderator effects of caregiver resources?

Personal psychological, social and health resources of informal caregivers are often assumed to attenuate or increase caregiving stress. This hypothesis was tested by investigating the effect of caregivers' resources on the relationship between their appraisal of the caregiving situation and psychological distress. Caregiver resources measured were: problem-focused and emotion-focused coping, neuroticism, received emotional and instrumental support and physical functioning. Results show that none of these caregiver resources has moderator effects, neither for all caregivers together (n = 166), nor for subgroups of caregivers. These subgroups were: spouses, non-spouses, males, females, caregivers of minimally and mildly demented people and of moderately and severely demented people, respectively. The absence of moderator effects on caregiving stress suggests that caregivers of demented elderly people may need attention and support when they perceive pressure, regardless of their personal resources.     

失能老人主要居家照顾者的照顾评价、社会支持与心理健康的关系

目的探讨主要居家照顾者社会支持、照顾评价与心理健康的关系。方法利用社会支持量表、照顾评价量表和症状自评量(SCL-90)表对133名主要居家照顾者施测。结果①感情关系、每天照顾时间、自觉身体状况、医疗保险情况不同的主要居家照顾者的心理健康水平存在显著差异(t=-3.132、3.272-、4.430-、3.907,P<0.05或P<0.01),社会支持的需要程度、足够程度、照顾评价与心理健康水平相关显著(r=0.573-、0.688-、0.758,P<0.01);②自觉身体状况、社会支持的足够程度、照顾评价对心理健康水平具有良好预测能力(B eta=-0.266-、0.281-、0.507,P<0.05或P<0.01);③照顾评价在社会支持对心理健康的影响上起到了中介作用(△R2=0.132,P<0.01)。结论主要居家照顾者自觉身体状况、社会支持通过照顾评价影响心理健康,照顾评价对心理健康有直接影响作用。     

Is Salivary pH a Marker of Depression among Older Spousal Caregivers for Cancer Patients?

The pH in saliva, which decreases due to the activation of the sympathetic nervous system, may serve as a biomarker of psychological distress in caregivers but has rarely been studied in this context. The aims are to examine the levels of salivary pH as a possible biomarker of depression among caregivers and whether depression mediates the association between caregiving status (cancer caregivers vs. non-cancer caregivers) and pH levels. Cross-sectional data were collected from 68 consecutive-sampled spouses of cancer patients, and 42 age-matched individuals. Lower levels of pH saliva were found among caregivers of cancer patients than in the comparison group. Being a caregiver, poor subjective health, higher depression, and lower mastery predicted lower pH levels. In addition, depression mediated the associations of mastery with pH levels. The study provides preliminary evidence that salivary pH may serve as an easily tested indicator of the stress of caregiving and its related depression.     

Resilience and distress among amyotrophic lateral sclerosis patients and caregivers

OBJECTIVES: The objectives of this study were to assess the prevalence of depressive disorders and symptoms and their correlates in patients with amyotrophic lateral sclerosis (ALS) and caregiver spouses and to identify dimensions of resilience as well as distress. METHODS: Fifty-six patients with ALS and 31 caregivers were interviewed on one occasion, and 20 patients were subsequently reinterviewed during a scheduled medical visit at an ALS center. Major measures included the Structured Clinical Interview for DSM-IV, the Beck Depression Inventory, the Schedule of Attitudes Toward Hastened Death, quality of life, spirituality, and degree of hopelessness. The ALS Functional Rating Scale, spirometry measures of forced vital capacity, and the Karnofsky Performance Index were used to assess physical status. RESULTS: Neither patients nor caregivers displayed significant psychopathology with respect to either current depressive disorders or scores on symptom scales. Depressive symptoms and psychological distress were not related to time since diagnosis, degree of disability, or illness progression during the period of observation. More interest in hastened death was associated with greater distress, but willingness to consider assisted suicide was not. Among caregivers, perceived caregiver burden was significantly associated with finding positive meaning in caregiving. Concordance between patient and caregiver distress was high, suggesting that attention to the mental health needs of caregivers may alleviate the patient's distress as well. CONCLUSIONS: Clinical depression or significant depressive symptomatology is not an inevitable or common outcome of life-threatening illness, even in the presence of major disability.     

The delirium experience: delirium recall and delirium-related distress in hospitalized patients with cancer,their spouses/caregivers,and their nurses

We conducted a systematic examination of the experience of delirium in a sample of 154 hospitalized patients with cancer. Patients all met DSM-IV criteria for delirium and were rated with the Memorial Delirium Assessment Scale as a measure of delirium severity, phenomenology, and resolution. Of the 154 patients assessed, 101 had complete resolution of their delirium and were administered the Delirium Experience Questionnaire (DEQ-a face-valid measure that assesses delirium recall and distress related to the delirium episode). Spouse/caregivers and primary nurses were also administered the DEQ to assess distress related to caring for a delirious patient. Fifty-four (53.5%) patients recalled their delirium experience. Logistic-regression analysis demonstrated that short-term memory impairment (odds ratio [OR] = 38.4), delirium severity (OR = 11.3), and the presence of perceptual disturbances (OR = 6.9) were significant predictors of delirium recall. Mean delirium-related distress levels (on a 0-4 numerical rating scale of the DEQ) were 3.2 for patients who recalled delirium, 3.75 for spouses/caregivers, and 3.09 for nurses. Logistic-regression analysis demonstrated that the presence of delusions (OR = 7.9) was the most significant predictor of patient distress. Patients with "hypoactive" delirium were just as distressed as patients with "hyperactive" delirium. Karnofsky Performance Status (OR = 9.1) was the most significant predictor of spouse/caregiver distress. Delirium severity (OR =5.2) and the presence of perceptual disturbances (OR =3.6) were the most significant predictors of nurse distress. In conclusion, a majority of patients with delirium recall their delirium as highly distressing. Delirium is also a highly distressing experience for spouses/caregivers and nurses who are caring for delirious patients. Prompt recognition and treatment of delirium is critically important to reduce suffering and distress.     

Coping with breast cancer: patient, spouse, and dyad models

OBJECTIVE: The objectives of this study were 1) to assess similarities and differences between patients with breast cancer and their spouses in terms of coping strategies and adjustment (psychosocial and psychological) to cancer and 2) to investigate the pattern of relationships between the patients' and spouses' coping strategies and between each of these strategies and the patient's adjustment to the illness using three types of models: patient, spousal, and dyadic coping. METHODS: Seventy-three patients with breast cancer and their spouses completed questionnaires that measured distress (Brief Symptom Inventory), psychosocial adjustment, and coping strategies. RESULTS: The patients' distress was greater than their spouses', but a similar level of psychosocial adjustment was reported. The patients used more strategies involving problem-focused coping than their spouses. The use of emotion-focused coping, which included ventilation and avoidance strategies, was highly related to distress and poor adjustment on the part of the patient. The spouses' emotion-focused coping and distress were related to that of the patients. Dyad emotion-focused coping measures were highly associated with the patients' distress and adjustment. CONCLUSIONS: Spousal and dyad coping are important factors in a patient's adjustment to breast cancer.     

癌症与精神病人亲属心身状况及改善对策的跨文化探讨

目的研究居澳华裔及国内癌症及精神病人亲属的健康状况。方法以深层面谈和电话会谈、问卷法调查居澳华裔、居国内的癌症和精神病患者及其亲属共288人。结果绝大部分亲属有不同程度的焦虑、抑郁，伴有失眠、疲劳、衰弱等症状。2.78％～11．11‰被诊断为焦虑症、抑郁症或各种心身疾病。癌症病人亲属的健康状况随病人病情的波动而变化；精神病人亲属的健康状况随病人病情的进展和时间的推移趋向稳定。国内组与澳洲组表现有一定的差别。他们希望有完善的机构与设施帮助照顾其患病的亲人。结论建立完善的机构为癌症及精神病患者提供照顾等服务，帮助其亲属进行有效的心理调节，保持心身健康，是21世纪的国际性课题之一。     

Psychological adjustment in caregivers of school-age children infected with HIV: stress, coping, and family factors

OBJECTIVE: To assess for significant differences in psychological functioning between caregivers of HIV-infected children and caregivers of healthy children, and to examine the utility of applying a stress and coping model to caregivers of children with HIV disease. METHODS: Participants included caregivers of HIV-infected children (n = 36) and caregivers of a demographically matched control group of healthy children (n = 32). During their child's pediatric clinic visits, caregivers completed measures of psychological adjustment, stress, coping style, and family resources and support. They also completed a measure of their child's psychological adjustment. RESULTS: Caregiver psychological distress scores did not significantly differ between the HIV and control groups, and clinically significant rates of psychological distress were reported by more than a third of caregivers in both groups. Hierarchical multiple regression analyses revealed that independent of their child's illness status, stress and coping style were significant predictors of caregiver's psychological adjustment. In addition, caregiver psychological distress was a significant predictor of children's maladjustment. CONCLUSIONS: High rates of psychological distress were observed in caregivers of children with HIV disease; however, similarly high rates of psychological adjustment problems were found in caregivers of healthy children. Caregivers who reported high levels of daily stress and emotion-focused coping styles tended to report more psychological distress. Further, caregivers who reported more psychological distress also reported more internalizing and more externalizing behavior problems in their children, regardless of the child's illness status. These findings reflect the impact of poverty and environmental stress on caregivers' adjustment.     

Psychometric properties of the Spanish version of the involvement evaluation questionnaire in caregivers of patients with borderline personality disorders

The involvement evaluation questionnaire (IEQ) was created to evaluate the caregiver's experience of burden and the consequences of providing care to people with psychotic disorders. To date, the IEQ has not been validated with caregivers of people diagnosed with borderline personality disorder (BPD). The main objective of the study was to confirm the psychometric properties and factorial structure of the Spanish version of the IEQ in 151 caregivers of people with BPD, with an average age of 54.52 (SD = 9.91). Two models were tested by means of confirmatory factor analysis, following the original factor structure. The Models 1 and 2 displayed adequate fit, with comparative fit index and Tucker‐Lewis index > 0.90 and root‐mean‐square root of approximation < 0.08; however, Model 2 was more parsimonious. The Cronbach's alphas are adequate, ranging from 0.70 to 0.85. The consequences of providing care to people with BPD had a low or moderate association with the Level of Expressed Emotion scores. IEQ scores of caregivers of people diagnosed with BPD with psychiatric comorbidity did not differ from those of caregivers of people diagnosed with BPD without psychiatric comorbidity. The IEQ has adequate psychometric properties and can be utilized to assess burden in caregivers of people with BPD.     

Psychosocial burden of sickle cell disease on caregivers in a Nigerian setting

In Nigeria, with a high prevalence of sickle cell disease (SCD), families bear most of the burden of care for patients with this chronically disabling illness, because there are no national social welfare provisions. To assess the severity of indices of psychosocial burden among relatives of 24 SCD patients in crisis, in comparison with relatives of 57 SCD patients in stable condition. Cross-sectional study, using a burden instrument and Goldberg's General Health Questionnaire. Objective burden indices were significantly higher for SCD in crisis. The financial burden of SCD in crisis was significantly higher than the burden of disruption of family routines. 57.9% of all caregivers experienced little or no difficulty coping with SCD. Relatives with higher educational and occupational attainments (compared with those with lower attainments) experienced significantly lesser financial burden, disruption of family routines, and psychological distress. Compared with a similar study of cancer patients, relatives of patients in SCD crisis perceived similar financial, family routine burdens and psychological distress scores. Compared with US and UK reports, our caregivers were predominantly married and reflected the national range of socioeconomic groups. Global rating of burden was significantly predicted by disruption of family routines and higher age of caregivers. The psychosocial burden of SCD can be significantly reduced by controlling the frequency and duration of crises, as well as providing adequate information and socioeconomic support to families. Hematology staff should be sensitive to the psychosocial dimensions of SCD.     

Development and validation of a questionnaire for anxiety and depression in Pakistan

BACKGROUND: Currently clinicians and researchers in Pakistan have to use translated western instruments to screen for anxiety and depressive disorders. This study investigated the local idioms of emotional distress in Pakistan to develop a culturally valid and easy-to-use instrument to screen for common mental disorders in general clinical settings. METHODS: A systematic survey was conducted of psychiatric case notes of patients attending clinics in Peshawar and Lahore, diagnosed with anxiety or depressive disorders, to identify the range of common idioms of psychological distress. A pilot version of the questionnaire was refined and validated among a composite sample of 330 patients in inpatient, outpatient and rural community settings. ICD-10 Diagnostic Criteria for Research were used to define cases and patients' relatives acted as normal controls. RESULTS: The pilot version of the questionnaire was reduced to 42 items based on odds ratios between cases and controls. Anxiety symptoms were generally reported by depressed patients, but not vice versa. Finally 30 items were selected, in two sub-scales. This final version achieved sensitivity, specificity, and positive and negative predicted values of over 90% when comparing cases and controls. LIMITATIONS: This questionnaire was based on what patients tell doctors and may not capture the entire repertoire of local idioms of distress. The validation study was conducted only in an Urdu/Punjabi speaking population, in Lahore and surrounding areas. CONCLUSIONS: The Pakistan Anxiety and Depression Questionnaire consists of an anxiety/depression scale and a depression scale, each of 15 items. It demonstrates excellent validity as screening instrument for anxiety and depressive disorders in clinical settings in Pakistan.     

Cultural,interpersonal and psychodynamic factors in caregiving: towards a greater understanding of treatment noncompliance

The proportion of Hispanic elderly is steadily increasing in the USA. Concomitant to this increase are the problems associated with aging in Hispanic elders including their experience of caregiving. The needs of Hispanic caregivers have, typically, been overlooked and are especially problematic given the high levels of distress and depression within this group. The following case study examines the treatment of a depressed, Mexican–American woman's noncompliance with a cognitive–behavioral program for caregivers. Case data is analyzed within the framework of acculturation versus alternation models of adaptation. In addition, interpersonal and psychodynamic factors are examined to illuminate reasons for treatment failure. Concrete suggestions for improving the process and outcome of her treatment are offered. Copyright © 1999 John Wiley & Sons, Ltd.     

Family caregivers’ attributions about care‐recipient behaviour: Does caregiver relationship satisfaction mediate the attribution‐distress relationship?

Objectives. The relations of caregiver attributions about care‐recipient's problem behaviour to caregiving relationship satisfaction and caregiver distress were examined. Design. This is a cross sectional study. Seventy‐five family caregivers of individuals diagnosed with various disabling health conditions were recruited and interviewed. Caregiver attributions (internality, intentionality, responsibility, and controllability), caregiving relationship satisfaction, and caregiver distress variables were measured. Results. Structural equation techniques tested an a priori model of the latent constructs of caregiver attributions and caregiver relationship satisfaction to caregiver distress. Maladaptive caregiver attributions (i.e., more trait, higher intentionality, higher responsibility, and higher controllability) about care‐recipients’ problem behaviours predicted lower caregiving relationship satisfaction, which in turn was predictive of higher caregiver distress. Unexpectedly, caregiver attributions were not directly related to caregiver distress. However, attributions had an indirect effect on distress through relationship satisfaction. Younger caregivers experienced higher caregiver distress. Conclusions. Caregivers’ explanations about care‐recipient's problem behaviour are indicative of their satisfaction in the relationship with the care recipient, and poor caregiving relationship satisfaction is predictive of caregiver distress. Caregiver attributions and relationship quality may be considered in interventions with family caregivers.     

不同关系的社区精神分裂症家属的生存质量研究

目的了解不同关系精神分裂症家属的生存质量状况及其影响因素。方法对162位社区精神分裂症家属进行了一般资料及世界卫生组织生存质量测定量表简表(WHOQOL-BREF)的调查,并按照"父母"、"夫妻"、"兄弟姐妹"、"子女"对其进行分组,比较各组间差异。结果在社区精神分裂症家属中以"父母"比例最高,"父母"的生存质量总分、心理领域方面明显低于"子女"照料者,在生理领域方面"父母"得分均显著低于其他组。结论社区精神分裂症家属中"父母"的生存质量较低,尤其在生理领域方面。     

Interpersonal dysfunction in depressed women: impairments independent of depressive symptoms

BACKGROUND: The study explored the generality of interpersonal impairments in depressed women and examined the extent of their independence of current depressive episodes or symptoms. METHODS: 812 community women who were formerly depressed, currently depressed, or never depressed were compared on a variety of indices of interpersonal behavior and beliefs. Information was also obtained from their spouses, adolescent children, and raters. Current depressive mood and sociodemographic factors that might affect social functioning were controlled. RESULTS: Consistent with the hypotheses that interpersonal difficulties are not just consequences of depressive symptoms, formerly but not currently depressed women were significantly more impaired than never-depressed women on nearly all measures. They were less likely to be stably married, had poorer marital satisfaction, reported more spouse coercion and physical injury, had more problematic relationships with their child, friends, and extended family, reported more stressful life events with interpersonal and conflict content, and were more insecure in their beliefs about other people. Their spouses and boyfriends also reported more problems, and were themselves more likely to have diagnosable disorders. However, the groups did not differ in their children's perceptions of maternal warmth or hostility. LIMITATIONS: The cross-sectional design precluded conclusions about the causal direction of the relationship between interpersonal impairment and depressive disorder. Since clinical depression is more often than not followed by subthreshold symptoms that are not captured by standard diagnostic instruments, such symptoms are not easily discernable from preceding or co-existing interpersonal problems. Only women were studied. CONCLUSIONS: Interpersonal impairment is a stable feature of depression, a significant challenge to treatment, and may reflect underlying vulnerability to the onset, and recurrence, of depressive experiences.     

Evaluation of the needs of spouses of female carriers of mutations in BRCA1 and BRCA2

The process of genetic testing involves the entire family, including spouses. The objective of this study was to measure the specific needs and to describe the experiences of spouses of women who received genetic counseling for a positive BRCA1/2 result. We surveyed 59 spouses of female mutation carriers. The mean length of relationships was 26 years (range: 2.5-50 years). All were supportive of their spouses' decision to undergo genetic testing and counselling. Four respondents stated that they wished that they had received additional support at the time of test disclosure and 20% felt that their wives had received inadequate support. One-quarter of the spouses believed that their relationship had changed because of genetic testing; most felt that they had become closer to their wives. Husbands were most concerned about the risk of their wife dying of cancer (43%), followed by the risk of their spouse developing cancer (19%) and the risk that their children would test positive for the BRCA mutation (14%). Distress levels, measured by the Impact of Event scale, suggest that few spouses were experiencing clinical levels of distress.