Finding meaning through caregiving: development of an instrument for family caregivers of persons with Alzheimer's disease

Systematic assessment of the positive aspects of caregiving has been limited by the lack of comprehensive, theoretically based, and psychometrically sound measures. This study developed and tested a measure primarily designed to assess positive aspects and ways that caregivers find meaning through their experience of caring for a person with dementia. The measure has three subscales: Loss/Powerlessness, which identifies difficult aspects of caregiving; Provisional Meaning, which identifies how caregivers find day-to-day meaning; and Ultimate Meaning, which identifies philosophical/religious/spiritual attributions associated with the experience of caregiving. The measure is useful for understanding the close relationship between both the difficult and positive aspects of caregiving and also may be used to identify a caregiver's strengths in clinical and research settings.     

精神分裂症患者家庭照顾者照顾体验的现状及相关因素

目的:探索精神分裂症患者家庭照顾者在照顾过程中的体验状况.方法:采用便利抽样,2017年4月至2018年5月在海南省安宁医院选取149例门诊及住院精神分裂症患者的家庭照顾者,使用照顾体验量表(ECI)调查其照顾体验状况.采用方差分析、秩和检验、相关分析等进行单因素分析.结果:照顾者的ECI消极评价平均得分偏高,为81(69.5,95.5)分;照顾过程中有着一定的积极体验,积极评价的平均得分为22(18.0,28.0)分.照顾者的工作状况(Z=12.387,6.275;P＜0.05)、照顾态度(F=4.307,P＜0.05;Z=11.054,P＜0.01)、平均每天照顾时长(r=0.281,0.375;P＜0.001)对消极体验和积极体验均有影响;此外,照顾者的消极体验还与家庭经济状况有关(Z=4.980,P＜0.01);积极体验与照顾者的受教育程度有关(Z=9.352,P＜0.05).结论:精神分裂症患者家庭照顾者的消极体验偏高,但在长期照顾过程中也存在积极体验.照顾体验受多种因素影响,应给予照顾者更多关注和干预,以改善照顾体验,提高照护质量.     

Leukotoxin-diol: a putative toxic mediator involved in acute respiratory distress syndrome.

Leukotoxin is clinically associated with acute respiratory distress syndrome (ARDS). Recently, we found that leukotoxin-diol, the hydrated product of leukotoxin, is more toxic than the parent leukotoxin in vitro (Moghaddam and colleagues, Nature Med. 1997;3:562-566). To test if this difference in the toxicity of leukotoxin and leukotoxin-diol exists in vivo, Swiss Webster mice were administered leukotoxin or leukotoxin-diol. All mice treated with leukotoxin-diol died of ARDS-like respiratory distress, whereas the animals exposed to leukotoxin at the same dose survived. Histopathologic evaluation of the lungs revealed massive alveolar edema and hemorrhage with interstitial edema around blood vessels in the lungs of mice treated with leukotoxin-diol, whereas the lungs of mice treated with identical doses of leukotoxin had perivascular edema only and little change in alveolar spaces. Immunohistochemistry showed that the soluble epoxide hydrolase responsible for the hydrolysis of leukotoxin to its diol is concentrated in the vascular smooth muscle of small and medium-sized pulmonary vessels. In addition, 4-phenylchalcone oxide, an inhibitor of soluble epoxide hydrolase, was found to decrease the mortality induced by leukotoxin but had no effect on mortality induced by leukotoxin-diol. These studies provide strong in vivo evidence that leukotoxin may act as a protoxicant and that the corresponding diol is a putative toxic mediator involved in the development of ARDS.     

Psychological distress in carers of dementia sufferers

This study compares dementia sufferers and their carers referred to an old age psychiatry service with a non-referred group from the same community. It examines the level of stress in the carer with the age and sex of the carer, and with the degree of physical disability and cognitive impairment in the person with dementia. There was no difference between the two groups in the prevalence of stress but overall 65% of carers experienced significant levels of stress. Females and younger carers were more likely to experience stress. Stress in the carer was associated with high levels of physical disability but not with the degree of cognitive impairment. This study shows that considerable psychological distress occurs among carers of those with dementia in the community. If government policy of maintaining people with dementia in the community is to be pursued, measures to relieve carers must be included when planning services for this vulnerable group.     

Psychological distress by type of fertility barrier

BACKGROUND: We examined fertility-specific distress (FSD) and general distress by type of fertility barrier (FB). METHODS: In a random sample telephone survey, 580 US women reported their fertility intentions and histories. Six groups of women were identified: (i) no FBs, (ii) infertile with intent, (iii) infertile without intent, (iv) other fertility problems, (v) miscarriages and (vi) situational barriers. Multiple regression analyses were used to compare groups with FBs. RESULTS: Sixty-one percent reported FBs and 28% reported an inability to conceive for at least 12 months. The infertile with intent group had the highest FSD, which was largely explained by (a) self-identification as infertile and (b) seeking medical help for fertility. The no FB group had a mean Center for Epidemiological Studies Depression scale score above the commonly used cut-off of 16, although 23% of the women with FBs did score above 16. CONCLUSIONS: FBs are common. Self-identification as infertile is the largest source of FSD. More women with FBs had elevated general distress than women without FBs; mean general distress was below 16 for all FB groups. It may be that, for some women (even those with children), FBs can have lasting emotional consequences, but many women do heal from the emotional distress that may accompany fertility difficulties.     

Psychological distress and work and home roles: a focus on socio-economic differences in distress

BACKGROUND: Home and work factors have been linked to psychological status, but less is known about their contribution to social inequalities in psychological status. We examine whether social inequalities in psychological distress can be explained by work-home factors and whether the impact of these potential explanatory factors is similar for men and women. METHODS: Data are from the 1958 British birth cohort study. We sought to explain social class differences in psychological distress at age 33. Explanatory factors were classified as work-home roles: i.e. employment, marital status, domestic responsibility, children and elderly care; and work-home characteristics: i.e. job-strain, insecurity, unsocial working hours, youngest child's age, number of children and level of involvement in childcare. RESULTS: A social gradient in psychological distress was found: odds ratios for classes IV and V v. I and II were 2.65 (men) and 3.02 (women). Work factors had consistently stronger associations with psychological distress and with social class among men than women. Work factors had a greater impact on class differences in psychological distress in men. Associations for home roles and characteristics were less consistent and their combined effect on class differences in distress was negligible for both sexes. CONCLUSION: Explanations for the social gradient differ for men and women. Work may be more important for men than women, but the impact of home factors was not strong during the early adulthood of this cohort.     

Family caregiving in depression: impact on caregivers' daily life, distress, and help seeking

BACKGROUND: Attention to caregiving consequences has been mainly restricted to schizophrenia, although studies suggest that relatives of depressed patients also experience considerable distress. These studies, however, were conducted on small samples or with nonvalidated instruments. In our study, the caregiving consequences of 260 spouses and relatives of depressed patients were assessed with a well-validated 31-item questionnaire, the Involvement Evaluation Questionnaire (IEQ). METHODS: The IEQ was mailed to spouses and relatives of patients with major depression, dysthymic disorder, or other depressive disorders. Other instruments used were the Ways of Coping Checklist (WCC), a Dutch Social Support Questionnaire, and the Zung Self-rating Depression Scale (SDS). RESULTS: About 25-50% of caregivers worried about the patient's general health, treatment, safety, and future. They had to urge the patient to undertake activities, or took over tasks. There were relational strains, and they felt burdened, especially when the patient was in an acute phase. Caregivers often felt distressed and had to visit a (mental) health practitioner. Also, children were affected; caregivers reported high levels of difficult behavior, loss of appetite, sleeplessness, less playing, and less attention at school. Caregiving consequences occur less often than in schizophrenia, but the patterns are quite comparable. CONCLUSIONS: Caregiving consequences in depression occur frequently and cause distress in caregivers and patient's children. Attention should be paid to support relatives and spouses of depressed patients. Special attention should be paid to patient's children.     

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: outcome and consultation rates in one general practice

This paper reports a one-year follow-up of random samples of 90 male and 96 female patients attending one general practitioner. There was no statistically significant difference between men and women in the total score on the 28-item general health questionnaire or any of the subscores. However, the diagnostic labels applied to the two sexes were strikingly different as was the prescribing of psychotropic drugs. Outcome of psychological distress was assessed in terms of change in total general health questionnaire score. Two thirds of the patients (65%) showed normal scores at the beginning and end of the follow-up period, 19% changed from abnormal to normal and 8% changed from normal to abnormal. The remaining 9% had persistently high scores though less than half had been given a psychiatric diagnosis. They had very high consultation rates persisting over several years and three-quarters were known to have chronic physical illness. It seems possible that some patients with persistently high consultation rates who present with chronic, mainly somatic, symptoms may be or may become psychologically distressed to a significant degree and that this psychological distress goes unrecognized in the presence of physical disease.     

The effects of caregiving resources on the incidence of depression over one year in family caregivers of disabled elderly

The purpose of the study was to investigate the over-time effects of physical, psychological and social resources on the incidence of depression in family caregivers of the disabled elderly. Data were collected twice at a one-year interval from 1,141 primary caregivers of a disabled older person in an urban area of Japan using a self-reported questionnaire survey. The questionnaire included physical health as an indicator of physical resources, caregiving satisfaction and intention to care as indicators of psychological resources, and instrumental and emotional support network and formal home care service utilization as indicators of social resources. The mental health outcome measure was the General Health Questionnaire 12-item version (GHQ-12). Complete data on 235 non-depressed female caregivers were separated into 3 groups according to the relationship type (wife, daughter and daughter-in-law) and analyzed separately. Multivariate logistic regression models controlling for duration of caregiving, care-recipient's gender, ADL dependency and behavioral problems demonstrated that significant predictors of depression were caregiving satisfaction and intention to care in wives, caregiving satisfaction in daughters, and physical health and emotional support network in daughters-in-law. Noteworthy, intention to care increased the risk of depression in wives, while decreasing the risk of depression in daughters-in-law. The findings indicate that the effects of caregivers' resources on mental health may differ by relationship type.     

Peritraumatic dissociation as a mediator of peritraumatic distress and PTSD: a retrospective, cross-sectional study

The objective of the present article was to examine the mediational significance of peritraumatic dissociation in the relationship between peritraumatic distress and posttraumatic stress disorder (PTSD). A total of 71 individuals with spinal cord injuries completed interviews and questionnaires measuring PTSD symptomatology, peritraumatic dissociation, and peritraumatic distress. Peritraumatic dissociation was found to partially mediate the relationship between peritraumatic distress and PTSD symptomatology. These findings provide support for the hypothesis that peritraumatic distress and peritraumatic dissociation significantly impact PTSD severity. The findings also support the hypothesis that peritraumatic dissociation is provoked by peritraumatic distress. The results further indicate that although peritraumatic dissociation seems to be a significant risk factor for PTSD, it is not necessary for the development of PTSD; the presence of peritraumatic distress may be sufficient. These findings highlight the importance of investigating peritraumatic reactions after a traumatic event in order to identify individuals at risk for developing PTSD. Such a practice may help prevent the development of chronic conditions.     

Psychological distress two years after diagnosis of breast cancer: frequency and prediction

The present prospective study aimed at (1) investigating the frequency of high levels of psychological distress in women with early-stage breast cancer almost two years after diagnosis and (2) identifying characteristics associated with long-term distress. One hundred and seventy women participated on two occasions. Two months after surgery, patients completed questionnaires measuring psychosocial variables (e.g., stressful life-events, health complaints, sleep problems, social support, subjective distress, personality factors), demographic and biomedical variables (e.g., TNM status, type of surgery). At the second measurement, subjective distress was assessed for a second time by means of the Impact of Events Scale (IES). Almost two years after diagnosis, 16% of the women reported a high level of psychological distress as measured by the Intrusion scale (IES). Best predictors of a high level of distress were: intrusive thoughts about the disease, trait-anxiety, health complaints and problems with sleeping. No significant association was found between previous life-events, social support or biomedical variables and levels of distress.     

Social support as a mediator of optimism and distress in breast cancer survivors

Breast cancer patients can experience emotional distress as a result of diagnosis and treatment. Higher levels of optimism and social support are associated with less emotional distress in cancer patients. This 12-month prospective study followed 69 women who had completed treatment for Stages 0-II breast cancer. At 3-month intervals, participants completed measures of mood disturbance, optimism, and social support. As hypothesized, affective social support mediated the relationship between optimism and distress in early-stage breast cancer survivors at baseline and 6 months but not at 1 year. In contrast, confidant social support did not mediate the optimism-distress relationship at any time point. Clinical and research implications of these findings are discussed.     

Psychological distress after the occupation: A community cross‐sectional survey from Lebanon

Objectives. Jezzine inhabitants were exposed to war stressors for 17 years. This study aims at determining the prevalence of psychiatric distress (PD) among Jezzine citizens who were exposed to war for 17 years and to identify associated factors. Design. Cross‐sectional study. Methods. A sample of 142 citizens was randomly selected from a population of 5,000. A novel questionnaire was used to collect data on war exposure, socioeconomic and demographic variables. PD was assessed using GHQ‐12. Data were analysed by logistic regression. Results. PD was found in 26% of Jezzine residents. PD was associated with age, marital status, education, experience of war‐related events, chronic illness and alcohol drinking. After adjusting for all variables, PD remained significantly correlated with older age and low education (odds ratios were 7.59 and 4.28, respectively). Conclusions. The prevalence of PD among the residents of Jezzine after a year of the Israeli withdrawal was similar to that reported in other communities whether they were, or were not, exposed to war stress. Higher prevalence among older and less educated individuals suggests the presence of a significant age cohort effect and cognitive construal factors for PD among persons chronically exposed to war‐related stressors.     

Psychological distress following a natural disaster: A one-year follow-up of 98 flood victims

Ninety-eight individuals rendered homeless by flooding of the Mississippi were interviewed shortly after the disaster and one year later. Data included demographic information, severity of property damage, personal reactions to the disaster, and the 20-item Mental Status Index, a symptom checklist designed to quantify emotional stress. Just after the flood victims were asked to complete the Mental Status Index twice, using as a frame of reference their mental/emotional state before the disaster and their mental/emotional state since the disaster experience. The results indicated a significant increase in emotional distress immediately after the flood. One year later, the level of emotional distress had declined somewhat relative to that reported shortly after the disaster; however, it still remained significantly above pre-flood levels. Although victims continued to show effects of the disaster after 12 months, none developed a major mental illness for the first time. Findings of this and similar followup studies suggest that the most appropriate and cost/effective role for the mental health worker in times of natural disaster is that of a consultant in crisis management to primary caregivers such as family physicians, clergy, and full-time disaster personnel.