Patients' perspective on their relatives' involvement in treatment during a short-term psychiatric hospitalization

With the growing interest in the patient's perspective regarding mental health services, several instruments have been developed for this area of research. However, despite the availability of multidimensional questionnaires, the dimensions evaluated have rarely addressed the issue of the involvement of relatives in treatment. The present study aimed at documenting the preferences and level of satisfaction of 92 patients hospitalized in short-term psychiatric units regarding the involvement of their relatives in treatment. Data was collected using an open-ended question and two standardized scales developed for the purposes of this study. The results demonstrated that the majority of patients preferred that their relatives be involved in many aspects of their treatment. In fact, a relatively high rate of dissatisfaction of 35.6% was observed among patients concerning the lack of notification of their relatives about changes in their treatment. In the context of deinstitutionalization, where relatives are invited to play an increasing role in the community reintegration of the patient, these findings highlight the pertinence of addressing the patient's perspective with regard to treatment planning with relatives. Accepted: 30 June 1998     

Influence of relatives on fatigue experienced by patients with facioscapulohumeral dystrophy, myotonic dystrophy and HMSN-I

OBJECTIVES: Fatigue is a common symptom experienced by patients with various neuromuscular disorders. The purpose of this study was to assess the influence of relatives on fatigue experienced by patients with various neuromuscular disorders. METHODS: In total, 106 close relatives of patients with facioscapulohumeral dystrophy (FSHD), adult-onset myotonic dystrophy (MD), and hereditary motor and sensory neuropathy type I (HMSN), completed the Checklist Individual Strength for themselves, and how they thought their relatives filled in this questionnaire. We compared the agreement between the two. The reaction of the relative to the fatigue and to the neuromuscular disorder of the patient was assessed by the Family Response Questionnaire. Marital dissatisfaction was also measured. The influence of the relative's response to the patients' fatigue and the relatives' fatigue on the fatigue of the patient was tested in linear regression models. RESULTS: In all 3 patient groups, the responses of the relatives to fatigue and disease were characterized by sympathetic-empathic responses. Low agreement existed between relatives and MD patients (r = 0.26) over the patients' level of fatigue, but higher agreement was found between relatives and FSHD (r = 0.67) and HMSN (r = 0.73) patients. The spouses of MD patients reported less marital satisfaction. The sympathetic-empathic responses of the relatives of FSHD and HMSN patients, and in FSHD also the fatigue experienced by the relative, contributed significantly to higher levels of fatigue experienced by the patients. CONCLUSION: The sympathetic-empathic responses of close relatives to the fatigue of the patient were related to the higher levels of fatigue experienced by FSHD and HMSN patients, but not MD patients.     

Misperceptions of comprehension difficulties of stroke patients by doctors, nurses and relatives.

Doctors, nurses and relatives involved with 30 recently aphasic stroke patients were asked to predict how the patient would perform on a comprehension test. Results show that not only do doctors, nurses and relatives underestimate the receptive disability of these patients, but they also illustrate a lack of agreement between health professionals. Implications for management are considered.     

Level of caregiver burden among relatives of the mentally ill in South Verona.

Identifying the burden of care on relatives of the mentally ill remains an integral part of research in community psychiatric services. The present study aimed to assess the level and extent of burden on relatives in South Verona (northeast Italy). The South Verona catchment area provides a comprehensive, community-based psychiatric service with minimal reliance on the hospital. Patients were selected from the South Verona Psychiatric Case Register and 40 of their relatives were interviewed using structured assessments measuring objective burden, patient behaviour, coping strategies, satisfaction and needs for services. Both positive and negative aspects of burden were apparent, 92% of relatives continued to maintain contact with friends/relatives, 72% had no change to their family income, and 52% could manage any household disruptions during a crisis. The main negative effects for relatives included reduced leisure activities (57%) and psychological problems (67%). The greatest burden was on relatives of patients who were male (P = 0. 016), unemployed (P = 0.013) and diagnosed with psychosis (P = 0. 041). The implications of employment for patients and its association with lower levels of caregiver burden are discussed.     

Illness representations among first-degree relatives of people with Alzheimer disease

The purpose of this study was to examine attitudes, beliefs, and experiences regarding Alzheimer disease (AD) among patients' first-degree relatives, a group that is at increased AD risk and often involved in health care decision-making for affected family members. Children and siblings (N = 203; age range, 30-92 years; 75% female) of people with AD completed a questionnaire (response rate, 90%) that assessed mental representations of AD, including knowledge, cause and treatment beliefs, distress, and perceived threat. In general, relatives were knowledgeable about AD, had an accurate sense of their disease risk, and endorsed etiologically significant factors as causes. Nonetheless, many participants held misconceptions about AD (e.g., most cases are hereditary) and what may be unrealistic expectations for future treatment developments. Levels of perceived distress and threat were generally high and associated with female gender and younger age. AD represented the foremost health concern of approximately one third of first-degree relatives. Health education efforts are needed to address misconceptions about AD genetics and to disseminate information about the availability of effective treatments. Further research on illness representations is needed to better understand coping and decision-making among those at risk for AD.     

Subjective experience in patients with brain injury and their close relatives before and after a rehabilitation programme

This study reports results from 143 adult patients with cerebrovascular accident, traumatic brain injury or other acquired brain injury who underwent a neuropsychologically-based post-acute rehabilitation programme. Immediately pre- and post-programme, patients, as well as close relatives, completed the European Brain Injury Questionnaire (EBIQ) regarding patient symptoms, together with the impact of injury on the relative. Results for the three groups of patients were compared to those of 64 control subjects without brain injury. There were three major findings. First, significantly higher levels of symptoms were found in the patient groups at pre-programme evaluation, compared to the control group.Within the patient groups there were comparatively few differences between the self-reports of the patients and the reports of their relatives. Second, the patients showed significantly reduced levels of symptoms post-programme, both in their self-reports and in their relatives' reports. These levels remained however above those of the control group. Third, the reported impact of the injury to the patient upon their relatives was significantly reduced post-programme. Thus, this study further documents that patient symptoms, and the impact of these on close relatives, may be broadly reduced, but perhaps not eliminated, as a result of neuropsychological rehabilitation.     

Impact of cognitive-psychoeducational interventions in bipolar patients and their relatives.

BACKGROUND: In recent years, several controlled studies could show that psychoeducational interventions have been effective for relapse prevention in bipolar disorders. We therefore established a cognitive-psychoeducational group intervention with 14 sessions providing information about the illness, early warning signs, cognitive and behavioural strategies for stress management and social rhythm. Additionally we offered a group intervention for the patients' relatives. The objective of this study was to describe the outcome associated with our psychoeducational intervention in bipolar patients and their relatives. METHODS: Sixty-two bipolar patients attended 14 sessions (à 90 min) of cognitive-psychoeducational group therapy. Patients' knowledge of bipolar disorder and their satisfaction with the treatment were assessed using self-developed questionnaires before and after the group intervention. Additionally, 49 relatives of bipolar patients received two psychoeducational workshops of 4 hours each. We assessed demographic variables, burden, high expressed emotion and depressive symptoms of the relatives before and after the two workshops and at 1-year follow-up. RESULTS: Patients significantly improved their knowledge of bipolar disorder. They also have benefited from the discussions and the exchange of useful coping strategies. Burden and high expressed emotions showed no significant reductions at post-assessment, however they were significantly reduced at 1-year follow-up. Relatives also felt significantly better informed about the illness. CONCLUSIONS: These findings show that psychoeducational interventions in bipolar patients and their relatives improve patients' and their relatives' knowledge of the illness and the burden of the disorder as well as high expressed emotions are reduced in relatives at 1-year follow-up.     

The Circle Model—support for relatives of people with dementia

Home care for cognitively impaired elderly puts tremendous stress and burden on their families. Therefore it is important to search for effective care models in order to provide support for this group. In this study, an intervention model—the Circle Model—was developed, tested and evaluated in six places in Sweden. The model is unique in that family caregivers and volunteers were trained together in study circles. After their training, the volunteers replaced the caregivers in the homes on a regular basis, which permitted the caregivers some relief from the demands of caregiving. Interviews were conducted with the participants to gather information about their training and relief care experiences. The caregivers reported that the study circle provided opportunity to exchange experiences with other people in similar situations. They felt a spirit of community with other relatives, and were able to increase their knowledge in care providing and coping strategies. The emphasis in temporary relief care by the volunteers was placed on providing the relatives with feelings of security and relaxation. The satisfaction among the Circle Model participants was reciprocal. The volunteers also reported high satisfaction and appreciation of the knowledge which they acquired from the caregivers. The Circle Model brings new dimensions to the home care situation and should be seen as a complement to social services support.Copyright © 1998 John Wiley & Sons, Ltd.     

Measuring the opinions of memory clinic users: patients, relatives and general practitioners

BACKGROUND: The opinions of memory clinic users are important to assess the value of memory clinics. OBJECTIVE: To measure the quality of care of an outpatient memory clinic for the elderly as perceived by patients, their relatives and general practitioners (GPs). METHODS: An observational study was conducted to measure the opinions of the users of a typical outpatient memory clinic. Opinions on five aspects were measured: (1) communication of the results, (2) provision of diagnostic information, (3) attitude of the clinicians, (4) usefulness of the medical assessment, and (5) information and advice to relatives. Patients and relatives were both interviewed with a dementia care satisfaction questionnaire. The GPs' opinions were derived with a self-constructed questionnaire. RESULTS: On 105 consecutive assessments, 101 opinions of GPs, 81 of caregivers and 31 of patients were recorded. Positive opinions were recorded on the way the results were communicated, the usefulness of the assessment and attitude of the clinicians. In contrast to GPs and relatives, patients were less positive about the clarity of the diagnostic information received. Both relatives and GPs were negative on information and advice to relatives. CONCLUSIONS: Patients, caregivers and GPs had positive opinions about the diagnostic value of the memory clinic. Quality improvement could focus on the clarity of the diagnostic information for patients and on better advice to relatives.     

心理干预对精神分裂症患者亲属心理状况的影响

目的：探讨心理干预对精神分裂症患者亲属心理状况的影响。方法：采用焦虑自评量表（SAS）、抑郁自评量表（SDS）和自编精神分裂症健康知识调查问卷对83名精神分裂症患者的亲属进行调查,并对其进行为期4周的心理干预。结果：精神分裂症患者亲属心理干预前的SAS和SDS评分分别为（53.90±2.02）分和（61.40±1.07）分,显著高于全国常模的（41.90±2.60）分和（41.40±1.83）分（P〈0.05）;心理干预后患者亲属的SAS和SDS评分分别为（41.00±1.56）分和（41.50±1.08）分,较干预前有显著降低（P〈0.05）;干预后亲属对患者疾病相关知识的知晓度明显提高。结论：心理干预可有效改善患者亲属的心理状况。     

Prevalence of stroke and vascular risk factors among first-degree relatives of stroke patients and control subjects. A prospective consecutive study

BACKGROUND: Genetic and environmental factors may be of importance for stroke risk. We assessed the prevalence of stroke and vascular risk factors among first-degree relatives and spouses of stroke patients and control subjects. METHODS: As a part of the Lund Stroke Register study, we asked 925 consecutive patients with first-ever stroke and 286 control subjects to complete a questionnaire about all their first-degree relatives and spouses. The questionnaires addressed whether these relatives had been affected by stroke or TIA, hypertension, heart disease, diabetes mellitus, and if they were smokers. RESULTS: A total of 606 patients and 261 control subjects returned the questionnaire, providing information on 4,972 first-degree relatives and 738 spouses. The prevalence of stroke or TIA was 12.3% among first-degree relatives of patients and 7.5% among first-degree relatives of control subjects (OR 1.74, 95% CI 1.36-2.22). Corresponding results for hypertension were 21.0 and 16.7% (OR 1.33, 95% CI 1.10-1.60). The prevalences of heart disease, diabetes mellitus and smoking did not differ significantly between first-degree relatives of patients and control subjects. Spouses of patients and control subjects had similar prevalences of stroke or TIA and vascular risk factors. CONCLUSIONS: The prevalences of stroke or TIA and hypertension are higher among first-degree relatives of stroke patients than among first-degree relatives of control subjects. This, and the lack of differences between spouses of patients and control subjects, indicates that an increased risk of stroke may in part be explained by heritability of hypertension.     

Patient satisfaction with psychiatric services. Findings of a key date survey

The aim of this study was to gain more empirical ideas for the concept of patient satisfaction and its usefulness as an instrument for quality assurance by analyzing the relationship between inpatient experiences and inpatient satisfaction with psychiatric services. Data were obtained from 91 inpatients of the Psychiatric Hospital of the Ludwig-Maximilians-University in Munich (85% of all patients who had been in hospital at least 3 weeks and who could be asked) by questionnaires on a fixed day.Patients had been asked about their overall satisfaction as well as their experiences with special aspects of the services.Overall satisfaction was high, but there was a remarkable amount of adverse experience with components concerning patient information and time with a psychiatrist offered to the patients.The results give evidence that communication and empathy of the medical staff are key indicators of patient satisfaction and dissatisfaction. Furthermore, results suggest that global satisfaction scores should not be used as an instrument of quality assurance.     

Risk of dementia in first-degree relatives of patients with Alzheimer's disease and related disorders

First-degree relatives of patients with Alzheimer's disease (AD) are at greater risk for dementia when compared with the relatives of their healthy peers, but not when compared with the relatives of patients with Parkinson's disease. This may indicate that the risk of dementia in these relatives is not specific to AD or that these studies are biased. We obtained a family history and vital status information on each first-degree relative of patients attending a clinic and in a group of recruited healthy elderly subjects. Patients formed two groups: probable AD and other forms of dementia or cognitive disorders without dementia. The odds of dementia in first-degree relatives did not differ between patient groups. The odds of dementia in relatives of patients with probable AD or other forms of dementia was six times that in the relatives of the healthy elderly subjects. The cumulative incidence of dementia increased with age in the first-degree relatives of all subjects. Approximately 50% of the first-degree relatives of patients with AD were demented by age 91 years, but almost the same number of the other patient group's relatives were demented as well. That figure was never reached in the healthy elderly subject's relatives. Because the risk of dementia in first-degree relatives of patients with AD was similar to that for patients with other disorders, we cannot exclude the possibility that this is the result of selection and information biases. Our investigation implies that the increased risk of dementia may not be specific to relatives of patients with AD; the risk may also be increased in first-degree relatives of patients with other neurologic disorders.     

Attitudes of relatives and nursing staff toward tuboenteral feeding in severely demented patients

Elderly patients with advanced dementia present a challenge with respect to efficient nutrition and hydration because of oropharyngeal dysphagia and lack of patient cooperation. For increasing numbers of patients, long-term tuboenteral feeding (TEF) is an alternative for providing food and fluids, with the hope of reducing the risk of aspiration. The purpose of this study is to learn about the opinions and the attitudes of relatives and nursing staff regarding patients on TEF for at least one year. The study included all the demented patients on TEF in four skilled nursing facilities and four nursing wards. Researchers retrieved clinical data from patients' medical records and prepared a questionnaire to survey the opinions of relatives and staff members. The study included 111 patients: 89 on nasogastric tube (NGT) feeding and 22 on percutaneous endoscopic gastrostomy (PEG) feeding. The clinical condition of both groups was satisfactory, as reflected by albumin, hemoglobin, and Body Mass Index (BMI). Relatives of the demented patients as well as the staff members were ambivalent toward TEF. Although most of them called it an essential procedure for delivering food and fluids for life support, about the same number expressed concerns that TEF prolonged a life of suffering. Nevertheless, most relatives and staff members were resistant to the idea of withholding TEF. The data show that TEF does provide efficient nutrition and hydration to patients with advanced dementia, and it is used in accordance with the will of the relatives. Any change in the present approach regarding TEF in these patients should be preceded by discussions with their relatives.     

The problem of non-compliance in schizophrenia: Opinions of patients and their relatives. A pilot study

INTRODUCTION: The relapse rate in patients suffering from schizophrenia is considerably higher than that which would be expected from the appropriate use of antipsychotics as prophylactic treatment. One of the reasons for this discrepancy is patients' non-compliance. In this study we examine reasons given by patients and their relatives as causes for past or possible future non-compliance. METHOD: Questionnaires were completed by 29 stabilized outpatients and their relatives, followed-up regularly (at least once per month), by the Mental Health Centre of Volos. RESULTS: Fifty percent of the questionnaires collected from schizophrenic patients (n=22) mentioned non-compliance in the past or the possibility in the future. Among the reasons stated by patients and their relatives in general, 60% had to do with lack of knowledge about the disease, and, specifically, its course and management; 20% had to do with lack of insight, 10% with social pressure and 10% with drug side-effects. Overall 50% of the causes were related to the use of medications. The major reason for compliance (54%) was the feeling of trust in the doctor. CONCLUSION: Mental health professionals should be aware of the high potential for non-compliance, even among regular attenders of outpatient psychiatric clinics. Part of the solution to this problem could be the provision of information to patients and relatives in lay terms, aided by written suggestions to the doctors on how to present the information. (Int J Psych Clin Pract 2000; 4:147-150)     

Social and clinical factors influencing the choice of coping strategies in relatives of patients with schizophrenia: results of the BIOMED I study

The impact of social and clinical factors on the choice of coping strategies of a sample of 236 relatives of patients with schizophrenia, living in five European countries, was explored using well-validated questionnaires. The adoption of problem-focused coping strategies was more frequent among young relatives and among relatives of younger patients, and was associated with higher levels of practical and emotional social support and of professional help. In contrast, emotion-focused strategies were more frequently adopted by relatives who had been living longer with the patient and who had poorer social support. It is suggested that supportive and educational interventions should be provided as early as possible to relatives of patients with schizophrenia, which, in addition to having a practical focus, should also have a social focus, aiming at extending the family's social network. Accepted: 31 December 1997     

Patients and families desire a patient to be told the diagnosis of dementia: a survey by questionnaire on a Dutch memory clinic

BACKGROUND: Controversy exists as to whether dementia patients should be told their diagnosis. OBJECTIVE: This study examined as to whether, both patients with subdued memory impairment and their accompanying relatives want a diagnosis of dementia or somatic disease disclosed to the referred patient. METHOD: Fifty consecutive out-patients referred to a memory clinic and their accompanying relatives filled in a questionnaire regarding their views on telling the diagnosis to the patient in case of a somatic disease and in case of a dementia. An ordinal scoring system was used (not important 1; little important 2; important 3 and very important 4). RESULTS: Forty-six (92%) questionnaires were completed. All the patients and their accompanying relatives thought it was at least important that physicians should tell the patient their diagnosis in case of a somatic disease, and 96% of the patients, 100% of the spouse and 94% of the non-spouse accompanying relatives stated the same in case of a dementia. All the spouses and most of the accompanying relatives showed similar desires for a dementia or somatic diagnosis. CONCLUSION: In The Netherlands, out-patients with subdued memory impairment, mostly suffering from a dementing illness, wish to be informed of their diagnosis, therefore should not automatically be considered incompetent.     

Lack of support for the inability to taste phenylthiocarbamide as an endophenotypic marker in patients with schizophrenia and their first-degree relatives

OBJECTIVE: This study sought to replicate recent findings that both patients and relatives are significantly more likely to be phenylthiocarbamide (PTC) nontasters than healthy controls, and that within the patient group, nontasters have more severe positive and/or negative symptoms than tasters. Associations between PTC-tasting status and olfactory identification scores also were examined. METHOD: PTC perception and olfactory identification were assessed in 48 patients with schizophrenia or schizoaffective disorder, 28 first-degree relatives, and 32 healthy volunteers. RESULTS: The three groups did not differ in PTC taste sensitivity. Findings did not change after: a sensitivity analysis that re-categorized participants who "possibly" tasted PTC, excluding Caucasian participants, or restricting the sample of patients to only those with schizophrenia. Among the patients, tasters and nontasters did not differ with regard to positive, negative, or general psychopathology symptoms. In the combined sample and the three groups separately, there were no associations between PTC-tasting status and olfactory identification scores. CONCLUSIONS: This study, conducted specifically as an attempt to replicate previously reported findings, failed to provide support for PTC perception as an endophenotypic marker for schizophrenia. Further research is warranted.     

精神分裂症患者亲属应对方式、心理健康状况及健康教育需求的研究

目的探讨精神分裂症患者亲属应对方式、心理健康状况及其相关性以及健康教育需求情况。方法应用特质应对方式问卷、症状自评量表(SCL-90)、自制健康知识知晓情况及健康教育需求情况调查表对100名精神分裂症患者亲属进行调查。结果精神分裂症患者亲属积极应对因子分低于常模,消极应对因子分高于常模,其SCL-90总分及各因子分均高于常模,差异有显著性(P<0.05或0.01),相关分析表明,精神分裂症患者亲属SCL-90躯体化、敌对因子分与积极应对分呈显著负相关(P<0.05),SCL-90总分、强迫、人际关系、抑郁、焦虑、敌对、恐怖、偏执、精神病性因子分与消极应对分呈显著正相关。97%的患者亲属知道疾病的诊断,但缺乏护理知识与技能,94%的患者亲属希望医务人员传授健康知识,对健康知识的需求侧重于安全护理、疾病症状、沟通方法、用药指导、疾病预防及康复知识、日常生活护理指导等。92%的亲属希望提供个别指导,83%的亲属选择提供科普手册。出院后健康教育方式调查发现,78%的亲属选择护士家访,63%选择电话咨询。结论精神分裂症患者亲属多采用消极应对的方式,而较少采用积极应对的方式,其心理健康状况较差,且与应对方式密切相关。     

Changes in the electrodermal activity of schizophrenic patients associated with changes in the expressed emotion status of their relatives.

Thirty-nine relatives of schizophrenic patients, who had been rated as high on Expressed Emotion (EE) during the patients' admission for an acute episode, were re-rated on EE 9 months after discharge from the index admission. Electrodermal activity was recorded from the patient during a 15-min period when the relative was absent and a similar period while the relative was present. Recording took place during the index admission and at a 9-month follow-up. A comparison was made between those patients whose relatives remained high EE at follow-up (Stables) and those whose relatives change to low EE (Decreasers). No differences were apparent between these two groups, however, differences were found within groups. At admission both groups showed an increase in electrodermal measures from the relative-absent period to the relative-present period. At 9-month follow-up, the Stables still exhibited this direction of change, whereas the Decreasers showed a decrease in electrodermal activity between these periods.