In a population-based study 219 family members of cognitively impaired elderly (casegroup) and 255 family members of cognitively healthy elderly (control-group) were interviewed about their situation as a caregiver to an old person. Twenty-six family members in the case-group reported abusive behavior in the care of the elderly at home. These family members are compared with 154 family members in the control-group, reporting other coping strategies than abusive. In the abusive group most of the elderly were in a mild stage of dementia, and the family members reported more strain in the care situation. The family members were older, judged their health as deteriorated, and were mostly living together with the dependent elderly.
Advances in medical technology now permit children who need ventilator assistance to live at home rather than in hospitals or institutions. What does this ventilator-dependent life mean to children and their families? The impetus for this essay comes from a study of the moral experience of 12 Canadian families--parents, ventilator-dependent child, and well siblings. These families express great love for their children, take on enormous responsibilities for care, live with uncertainty, and attempt to create "normal" home environments. Nevertheless, they experience social isolation, sometimes even from their extended families and health care providers. Their lives are constrained in many ways. The challenges faced by parents of technology-dependent children raise questions of justice within society and within families.
Accessible support programs can improve health outcomes for family caregivers of older relatives with a chronic condition. Over the course of 6 months, 27 experienced family caregivers provided weekly support via the telephone to 66 individuals, either new family caregivers of seniors recently diagnosed with stroke or newly vulnerable family caregivers (i.e., facing increasing demands from the deterioration of their senior relative's condition) of seniors with Alzheimer's disease. Qualitative data documented the perceived impact of the intervention, including increased satisfaction with support, coping skills, caregiving competence and confidence, and decreased caregiver burden and loneliness. Caregivers identified varied support processes that overcame support deficits in their social networks. These processes can facilitate replication in future research and inform practice, programs, and policies.
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
The objective was to describe the psychosocial burden experienced by informal carers of elderly stroke victims, and to identify its predictors among baseline characteristics of the patients. From a prospective study of 171 elderly stroke patients admitted to a geriatric ward for rehabilitation in the acute phase, 68 patients living at home with a primary caregiver were identified 6 months after the stroke. At baseline, all the patients were assessed with respect to motor function, cognitive function, global handicap and activities of daily living, and after 6 months the caregivers were assessed, using the Relatives' Stress Scale. According to this, the most frequent impacts were worries that an accident might befall their relatives, that they had to reorganise their household routines and further, that their social life and ability to take holidays had been reduced. Impaired cognitive function was the only baseline patient characteristic that predicted a subsequent psychosocial burden on the carer. Special attention should be paid to elderly stroke patients initially assessed with impaired cognitive function and their caregivers.
There are a limited number of scales available in the Spanish language that can be used to detect burden among individuals who care for a dependent family member. The purpose of this work was to adapt and validate the Caregiver Risk Screen (CRS) scale developed by Guberman et al. (2001) (Guberman, N., Keefe, J., Fancey, P., Nahmiash, D. and Barylak, L. (2001). Development of Screening and Assessment Tools for Family Caregivers: Final Report. Montreal, Canada: Health Transition Fund).
The sample was made up of 302 informal caregivers of dependent family members (average age 57.3 years, and 78.9% were women). Scale structure was subjected to a confirmatory factor analysis. Concurrent and convergent validity were assessed by correlation with validated questionnaires for measuring burden (Zarit Burden Inventory (ZBI)) and psychological health (SCL-90-R).
The results show a high level of internal consistency (Cronbach's alpha = 0.86), suitable fit of the one-dimensional model tested via confirmatory factor analysis (GFI = 0.91; CFI = 0.91; RMSEA = 0.097), and appropriate convergent validity with similar constructs (r = 0.77 with ZBI; and r-values between 0.45 and 0.63 with SCL-90-R dimensions).
The findings are promising in terms of their adaptation of the CRS to Spanish, and the results enable us to draw the conclusion that the CRS is a suitable tool for assessing and detecting strain in family caregivers. Nevertheless, new research is required that explores all the psychometric features on the scale.
Adaptation and psychometric evaluation of the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in a sample of Swedish family members of patients with life-threatening illness.
Family members often take on many caring responsibilities, with complex issues and challenges to consider. Feelings of preparedness, competence and reward are identified as concepts that may protect caregiver wellbeing and decrease negative outcomes related to caregiving.
This study aimed to translate, adapt and psychometrically evaluate the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in Swedish family members of patients with life threatening illness.
The study took place in four settings including advanced palliative care. The scales were tested in a sample of 125 family members of persons with life-threatening illness. All three scales were tested in relation to distribution of item and scale scores, missing data patterns, dimensionality, convergent validity and reliability.
The results in this study indicate that the Swedish versions of The Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale are valid, reliable and user-friendly scales. Confirmatory factor analysis showed that the scales were unidimensional and all demonstrated Cronbach's alpha values of =0.9.
As a result of this study it is anticipated that the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale could provide a basis for collaborative research between different countries and make international studies more comparable and generalizable despite differences in language and culture.
Instruments for evaluating end-of-life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end-of-life care in Sweden. The VOICES (SF) [Views of Informal Carers - Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member.
This study was performed based on translation and back translation, cross-cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life-limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording.
The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable.
The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross-national comparisons between different healthcare places and organisations.
This study explores the feasibility of adapting Kleinman's concept of explanatory models of illness to the study of youth violence and is conducted within the hermeneutic tradition. Data were collected by interviewing 11 violent adolescents, their parents, and their caregivers. Four types of explanatory models representing the adolescent girls', the adolescent boys', the caregivers', and the parents' understanding of youth violence are found; they correspond sufficiently to Kleinman's concept and establish the feasibility of adapting it to the study of youth violence. The developmental nature of the parents' and adolescents' models makes it feasible to study them by means of hermeneutic methodology. There are some clinically significant discrepancies between the caregivers' and the clients' explanatory models; identifying such discrepancies is an essential step in the process of breaking down barriers to therapeutic communications. Violent adolescents should be encouraged to define their own explanatory models of violence through dialogue with their caregivers.
This study presents effects of adding Circle of Security-Parenting (COS-P) to an already established comprehensive therapeutic model for early parent-child intervention in three Swedish infant mental health (IMH) clinics. Parents' internal representations and quality of parent-infant interaction were studied in a clinical sample comprised of 52 parent-infant dyads randomly allocated to two comparable groups. One group consisted of 28 dyads receiving treatment as usual (TAU) supplemented with COS-P in a small group format, and another group of 24 dyads receiving TAU only. Assessments were made at baseline (T1), 6 months after inclusion (T2) and 12 months after inclusion (T3). Changes over time were explored in 42 dyads. In the COS-P group, the proportion of balanced representations, as assessed with Working Model of the Child Interview (WMCI), significantly increased between T1 and T3. Further, the proportion of emotionally available interactions, as assessed with Emotional Availability scales (EA), significantly increased over time in the COS-P group. Improvements in the TAU-group were close to significant. Limitations of the study are mainly related to the small sample size. Strength is the real world character of the study, where COS-P was implemented in a clinical context not otherwise adapted to research. We conclude by discussing the value of supplementing TAU with COS-P in IMH treatment.