Deinstitutionalization is very demanding for families. Forced to fill in the gaps of the system, their role is one of creating a therapeutic environment while receiving little support from government service organizations. Cohabitation often leads to difficult relations between a patient and his or her family. In such a context, a large proportion of families experience problems in their attempt to fill their parental role. Women are more affected by this situation seeing they provide a large part of the emotional support to chronically ill mental patients and maintain the contact with service organizations. Also, they must confront professionals who often judge them as overprotective or responsible if the patient is their own child. The authors definitely agree that collective responsibility must complement family responsibility to ensure the respect of patients', families', and women's rights.
As family caregivers assume more prominent roles in the provision of home care to persons with serious illness, investigators must test the effectiveness of novel interventions to facilitate family caring for cancer patients. This article is based on results derived from a larger study carried out in Canada that was designed to compare 98 advanced cancer patient and family caregiver perceptions of 32 patient symptom experiences as captured by the Memorial Symptom Assessment Scale. We examined two main questions: (1) whether "natural" family caregivers' perceptions of patient lack of energy and worrying are more closely related to a self- or patient-oriented viewpoint and (2) whether induced "imagine-patient" perspective-taking can assist caregivers to achieve better perceptual accuracy. The caregiver's natural responses to neutral instructions that neither encouraged nor discouraged perspective-taking served as the baseline comparison with three other instructional sets, in which caregivers were prompted to: (1) provide a self-report on their own symptom experiences, (2) imagine how they would feel in the patient's situation (imagine-self), or (3) imagine how the patient would respond to his or her symptom situation (imagine-patient). Findings suggested that the family caregivers' natural judgments correspond most closely to what they do under an imagine-patient set than to what they do under any other set. Findings with respect to accuracy indicated that instructions to imagine the patient's perspective helped to prompt adjustments down from a self-oriented viewpoint, although definitive conclusions were precluded by difficulties with order effects.
This study aimed to illuminate both the content of and the care given to demented people and the reflections of home care staff about it as revealed in two clinical group supervision sessions (n = 36). Verbatim transcriptions were analysed using a phenomenological hermeneutic approach and the following were found to be reflected on: the pensioners' personal situation--disease-related behaviour, ADL-functions, social network and self-esteem; the pensioners' environment--their relationships to significant others, adequate level of housing/care, access to activities, and satisfactory personal space; pensioner/staff interaction--their relations to each other, the staffs' relation to the pensioners' family, and the balance between reality-orientation vs. validation; the staff's situation--co-operation with other professionals, in primary health care, hospital, and within the social services; job satisfaction, lack of knowledge and sharing of knowledge, and lack of resources, especially time. The reasoning of the participants under supervision was found to be based on medical, historical, psychological, and environmental explanations, or personal beliefs. Feelings explored during supervision were directed towards the pensioners or the pensioners' families, towards themselves or towards the management. The findings were interpreted within a nursing model based on the four central concepts of nursing; person, environment, nursing intervention and health. The reasoning about nursing care revealed in the supervision sessions reflected a holistic approach and the relationship between the staff and the demented person stood out as central for care quality. Thus focusing on what promotes or, respectively, obstructs this relationship is likely to be one important focus in clinical supervision not only to achieve improvement and high quality in home care but also to develop and enhance the quality of the working life of the staff. Since the results could be understood within a theoretical nursing care model, it may well be that if the supervisor functions within some theoretical model the participants may reach a more conscious approach and the risk of losing important aspects of caring will decrease.
Depressive symptoms in a population (N = 419) aged 65 years or over and receiving home nursing, home help or both were assessed by postal questionnaires including the Zung self-rating depression scale (SDS). Eighty-six percent participated, and 38 percent of both men and women scored 45 raw sumpoints or more in the SDS. The mean of the raw sumpoints was 42.1 (+/- 9.6) for men (N = 100) and 41.4 (+/- 9.0) for women (N = 238, the difference being nonsignificant. Home help clients scored less than home nursing patients or patients receiving both home nursing and home help. The population scoring 45 raw SDS sumpoints or more was investigated by a general practitioner, and the diagnosis of depression was made according to DSM III-criteria. The clinical investigations showed 26 percent of both men and women who participated to be depressive. Chronic depression was the most common class, followed by atypical depression. About two thirds of the depressive men and half of the depressive women were 'new' cases in that it had not been realized earlier that they suffer from depression. Atypical depression was the class where underdiagnozing was most evident. Among elderly men psychomotor retardation, libido loss, anorexia and indecisiveness and among elderly women psychomotor retardation, indecisiveness, emptiness and diurnal variation were common symptoms of depression.
A randomized trial of family caregiver support for the home management of older people suffering from moderate to severe progressive irreversible dementia was conducted in an urban center in southern Ontario. Thirty caregivers were allocated to receive the experimental intervention consisting of: caregiver-focused health care, education about dementia and caregiving, assistance with problem solving, regularly scheduled in-home respite, and a self-help family caregiver support group. Thirty control subjects received conventional community nursing care. Before completion of the intervention, 18 (30%) were withdrawn, almost equally from each group. The most frequent reason was long-term institutionalization of the demented relative (n = 10). At baseline, caregivers in both groups were suffering from above-average levels of depression and anxiety. After the six-month intervention period, we found neither experimental nor control group improved in these areas. However, the experimental group showed a clinically important improvement in quality of life, experienced a slightly longer mean time to long-term institutionalization, found the caregiver role less problematic, and had greater satisfaction with nursing care than the control group.
In this article a model for analyzing the coping behaviour of families with disabled children is presented. It is demonstrated how this model, through its holistic perspective, may be used for including culture as an important variable in studies of reactions to crisis and coping behaviour in such families. Some cross-cultural perspectives, based on studies from Norway and Botswana are presented, and the universality of reactions to critical events, as established in prominent theories of crisis are questioned.
In this study, the authors examine the under-investigated topic of patient-provided support for spouse caregivers. Thirty-four men with prostate cancer and their female partners were interviewed separately three times: before the man's radical prostatectomy, 8 to 10 weeks postsurgery, and 1 year postsurgery. The core category of active consideration encompassed 4 dimensions: easing spousal burden, keeping us up, maintaining connection, and considering spouse. Patient-provided support entails two overlapping tasks: minimizing the practical and emotional impact of the illness and tending to the caregiver's social-emotional needs. A theory expounding on the double bind of being both a patient and an agent in light of masculine socialization practices is articulated and brought to bear on the phenomenon of patient-provided support.
Comment In: Evid Based Nurs. 2003 Jan;6(1):3112546049
Fifty-two family caregivers for demented elderly people were investigated for burden and burnout experiences. A structured burden questionnaire and the Burnout Measure were used. Burnout is described in relation to the caregiver's gender, age, family relationship and the demented person's living place. Older wives and daughters were the most likely to report burnout in their lives. Some siblings and daughters-in-law also risked developing burnout. Regression analysis showed that limitation in social life, poor health and a lack of positive outlook on caring were the most important independent variables explaining variance in burnout among caregivers. There was no difference in burnout experiences between caregivers having their demented elderly person living at home and those having them in an institution.