Dimensional analysis of burden in family caregivers of patients with obsessive-compulsive disorder

Aims: Obsessivecompulsive disorder (OCD) also generates emotional burden in the patient's family members, but no study has evaluated the specific dimensions of burden. The objectives were to evaluate the dimensions of the Zarit Burden Interview (ZBI) and possible correlates. Methods: This was a cross-sectional study involving 47 patients and 47 caregivers, using a sociodemographic questionnaire; the ZBI; the Self Reporting Questionnaire; the Family Accommodation Scale; and the YaleBrown ObsessiveCompulsive Scale. The ZBI factor analysis was conducted using Varimax Rotation. Results: Six factors were identified, explaining 74.2% of the total variance: factor 1, interference in the caregiver's personal life (36.6% of the variance); factor 2, perception of patient's dependence (10.8%); factor 3, feelings of irritation or intolerance (9.2%); factor 4, guilt (7.2%); factor 5, insecurity (5.6%); and factor 6, embarrassment (4.8%). The six ZBI factors were associated with greater OCD severity and with greater accommodation to the patient's symptoms, and factors 1, 2, 5 and 6 with caregiver's psychological morbidity. Caregiver's sex (female) was associated with factors 5 and 6, relationship with the patient (being a parent or son/daughter) with factor 5, higher educational level with factor 6, living with the patient with factor 3, worse self-evaluation of health with factors 1, 5 and 6, and occupational status (not working) with factors 1, 2, 5 and 6. Conclusion: The dimensions of burden identified indicate the most affected aspects of a caregiver's life and could guide the planning of more specific interventions. Thus, the caregiver could participate more effectively in the OCD patient's treatment, with a lower impact on his/her life.

Skin and mucosa care in systemic sclerosis - patients' and family caregivers' experiences and expectations of a specific education programme: a qualitative study

BACKGROUND Skin and mucosal manifestations such as skin thickening, pruritus, reduced microvascular circulation, digital lesions, appearance-related changes, and dryness of the eyes and mucosa are common in systemic sclerosis (SSc). A specific skin and mucosa care education programme for patients and their family caregivers should increase their self-efficacy and improve coping strategies. AIMS The aims of this qualitative study were to explore the participants' experiences of both everyday life with skin and mucosal manifestations and the programme itself, while identifying unmet needs for programme development. METHODS Narrative interviews were conducted with eight SSc patients and two family caregivers of individuals with SSc. Using qualitative content analysis techniques, the transcribed interviews were systematically summarized and categories inductively developed. RESULTS The findings illustrated participants' experiences of skin and mucosal symptoms and revealed them to be experts in finding the right therapy mix alone (before diagnosis) and also in collaboration with health professionals (after diagnosis). Participants emphasized that the programme gave them useful education on skin and mucosa care. They described how they had to cope alone with the lack of information on pathophysiology, people's reactions, and the impact on their family and working lives. Nevertheless, participants said that they maintained a positive attitude by not dwelling on future disabilities. CONCLUSIONS Patients and family caregivers benefited from the individualized and SSc-specific education on skin and mucosa care. Future improvements to the programme should focus on imparting understandable information on SSc pathophysiology, dealing with disfigurement and seeking reliable disease information, as well as facilitating peer support.

Translation and cultural adaptation of the Stigma-Devaluation scale for use among family caregivers of mentally ill relatives in Jordan

Background/significance. Mental illness stigma is a matter of great concern to family caregivers. Few research studies have been conducted in the Arab World on family caregivers' perception of stigma associated with caring for a mentally ill relative. Review of the literature on measurement of the concept of stigma related to caring for a mentally ill relative yielded no instrument appropriate for use in a Jordanian sample. Reliable and valid instruments to measure stigma perception among family caregivers are needed for research and practice, particularly in Arabic speaking populations. ^ Purpose. The purposes of this study were: (1) translate the Stigma-Devaluation scale (SDS) into Arabic, modifying it to accurately reflect the cultural parameters specific to Jordan, and (2) test the reliability, the content and construct validity of the Arabic version of the SDS for use among a sample of family members of mentally ill relatives in Jordan. ^ Design. Methodologic, cross-sectional. ^ Methods. The SDS was translated into Arabic language, modified and culturally adapted to the Jordanian culture by a translation model which incorporates a cultural adaptation process. The Arabic SDS was evaluated in a sample of 164 family caregivers in the outpatient mental health clinic in Irbid-Jordan. Cronbach's alpha estimation of internal consistency was used to assess the reliability of the SDS. Construct validity was determined by confirmatory factor analysis (CFA). Measurements of content validity and reading level of the Arabic SDS were included. ^ Findings. Content Validity Index was determined to be 1.0. Reading level of the Arabic SDS was considered at a 6th grade or lower Cronbach's alpha coefficient of the modified Arabic SDS total scale was .87. Initial results of CFA did not fully support the proposed factor structures of the SDS or its subscales. After modifications, the indices indicated that the modified model of each subscale had satisfactory fit. ^ Conclusion. This study provided psychometric evidence that the modified Arabic SDS translated and culturally adapted instrument, is valid and conceptually consistent with the content of the original English SDS in measuring stigma perception among families of mentally ill relatives in Jordan. ^

Stressors, mediators, and health care outcomes of home enteral nutrition in family caregivers and their older adult care recipients

Family caregivers manage home enteral nutrition (HEN) for over 77% of an estimated 1 of every 400 Medicare recipients. Increasing usage of HEN in older adults combined with reliance on family caregivers raises concerns for the quality, outcomes, and costs of care. These concerns are relevant in light of Medicare limitations on nursing assistance and non-reimbursement for nutrition services, despite annual costs of over $600 million. This study applied stress process theories to assess stressor, mediator, and outcome variables salient to HEN and caregiving. In-home structured interviews occurred with a multi-ethnic sample of 30 caregiving dyads at 1–3 months after discharge on HEN. Care recipients were aged ≥60 (M = 68.4 years) and did not have dementia. Caregivers were aged ≥21, unpaid, and lived within 45 minutes of care recipients. Caregivers performed an average of 19.7 tasks daily for 61.9 hours weekly. Training needs were identified for 33 functional, care management, technical, and nutritional tasks. Preparedness scores were low (M = 1.73/4.0), and positively correlated with competence, self-rated quality of care and positive feelings, and negatively with overload, role captivity, and negative feelings (Ps < .05). Caregivers had multiple changes in lifestyle and dietary behaviors. Lifestyle changes positively correlated with overload, and negatively with preparedness and positive feelings. Dietary changes positively correlated with number of tasks, overload, role captivity and negative feelings, and negatively with preparedness (Ps < .01). Fifty-seven percent of caregivers aged >50 were at nutrition risk. Care recipients fared worse. Average weight change was −4.35 pounds (P < .001). Physical complications interrupted daily enteral infusions. Water intake was half of fluid need and associated with signs of dehydration (P < .001). Physical and social function was poor, with older subjects more impaired ( P < .04). Those with better prepared or less overloaded caregivers had higher functionality and QOL (P < .002). Complications, type of feeding tube, and caregiver preparedness correlated with frequency of health care utilization (Ps < .05). Efficacy of HEN in older adults requires specialized caregiver training, attention to caregivers' needs, and frequent monitoring from a highly skilled multidisciplinary team including dietitians. ^

PERCEPTIONS AND EXPERIENCES OF FAMILY CAREGIVERS OF BEDRIDDEN ELDERLY

Objective: To know the perceptions and experiences of family caregivers of bedridden elderly. Methods: A qualitative descriptive exploratory study conducted in January 2015 with four caregivers in a Family Health Center in the municipality of Araripe, CE. Data were collected through semi-structured interviews and the information was organized using the content analysis technique. A total of three categories emerged from the analysis of the reports of caregivers: the dependence process of the elderly; daily difficulties experienced by the caregiver; and satisfaction with the home care service. Results: The dependence process of the elderly took place as a consequence of pathological processes such as neoplasm, cerebrovascular accident and dementia. However, it could also be observed that physiological phenomena – common in old age – can also make individuals dependent on caregivers. As to the difficulties faced by the caregivers, they reported the need for greater involvement by the family, given that the centralization of work generates an overload and hence affects the care of the elderly. Teamwork in the home care context is fundamental, given that it allows a complementary and comprehensive care to the ledrely/caregiver binomial. Conclusion: Healthy aging is a major challenge to be overcome given that the development of a healthy lifestyle is difficult in all social strata. It is necessary to improve home care in order to provide support to caregivers so that the quality of life of bedridden elderly and caregivers is improved.

Meanings attributed by family members in pediatrics regarding their interactions with nursing professionals

Abstract OBJECTIVE Understanding the meanings attributed by family caregivers of children in hospital environments about their interactions with nursing professionals. METHODS This qualitative study used Symbolic Interactionism as a theoretical reference and Grounded Theory as the methodological framework. It was carried out in a Pediatrics Center in southern Brazil, in the first half of 2013. Participants were 15 family caregivers of hospitalized children. Data were collected through interviews and submitted to open and axial analysis. RESULTS Interactions with the nursing team enable family to trust or distrust in the provided child care and to positively evaluate the care received. CONCLUSION Interactions between family members and the nursing team contribute to the significance attributed by the family to the nursing care received by the child. Nurses should be aware of the attitudes of the nursing team regarding the child and their family, prioritizing humanized care.

Between freedom and reclusion: Social support as a quality-of-life component in the family caregiver-dependent person binomial

This is a qualitative study which uses Grounded Theory as its methodological framework and Symbolic Interactionism as a theoretical base to understand the experience of family caregivers for Cerebrovascular Accident (CVA) patients with regard to social support during their rehabilitation process at home. The components (themes and categories) of the phenomenon assuming home care and specifically the themes assuming care with support and assuming care without support were inter-related for the purpose of comparison and analysis, in order to apprehend how the interaction between them occurred, It was observed that, in addition to the recovery of the patient's autonomy, social support is one of the intervenient components in the quality of life for the family caregiver-disabled person binomial, particularly with respect to the caregiver's freedom to resume his/her life plan.

Caring for heart transplant recipients: The lived experience of primary caregivers

Objective: To understand the experience of primary caregivers of heart transplant recipients. Methods: A phenomenological approach was used to understand the caregivers' experience of caring for a heart transplant patient. In-depth interviews were conducted with 11 caregivers, in a Brazilian hospital, from December 2008 to March 2009. Results: Following the transplant, caregivers' lives change drastically; their priority becomes providing care for their relative. Despite successful transplant results, the uncertainty about future remains, generating permanent distress. Anxiety is exacerbated by familial or economic problems and, consequently, many participants turn to their local communities for support. Some caregivers learn from the experience and plan return to regular activities. Others feel helpless, unable to overcome personal losses and difficulties. Conclusions: Nurses are ideally placed to lead the way by providing family-centered support and education for caregivers of heart recipients. Listening to the concerns of family caregivers seems to be an essential aspect of effective interventions. © 2013 Elsevier Inc.

A randomized clinical trial of Behavioral Activation (BA) therapy for improving psychological and physical health in dementia caregivers: results of the Pleasant Events Program (PEP).

Dementia caregiving is associated with elevations in depressive symptoms and increased risk for cardiovascular diseases (CVD). This study evaluated the efficacy of the Pleasant Events Program (PEP), a 6-week Behavioral Activation intervention designed to reduce CVD risk and depressive symptoms in caregivers. One hundred dementia family caregivers were randomized to either the 6-week PEP intervention (N = 49) or a time-equivalent Information-Support (IS) control condition (N = 51). Assessments were completed pre- and post-intervention and at 1-year follow-up. Biological assessments included CVD risk markers Interleukin-6 (IL-6) and D-dimer. Psychosocial outcomes included depressive symptoms, positive affect, and negative affect. Participants receiving the PEP intervention had significantly greater reductions in IL-6 (p = .040), depressive symptoms (p = .039), and negative affect (p = .021) from pre- to post-treatment. For IL-6, clinically significant improvement was observed in 20.0% of PEP participants and 6.5% of IS participants. For depressive symptoms, clinically significant improvement was found for 32.7% of PEP vs 11.8% of IS participants. Group differences in change from baseline to 1-year follow-up were non-significant for all outcomes. The PEP program decreased depression and improved a measure of physiological health in older dementia caregivers. Future research should examine the efficacy of PEP for improving other CVD biomarkers and seek to sustain the intervention's effects.

Generalized resistance resources of informal caregivers: A study of demands for care, competing demands, perception of burden and cognitive stress

This study examines the relationship among psychological resources (generalized resistance resources), care demands (demands for care, competing demands, perception of burden) and cognitive stress in a selected population of primary family caregivers. The study utilizes Antonovsky's Salutogenic Model of Health, specifically the concept of generalized resistance resources (GRRs), to analyze the relative effect of these resources on mediating cognitive stress, controlling for other care demands. The study is based on a sample of 784 eligible caregivers who (1) were relatives, (2) had the main responsibility for care, defined as a primary caregiver, and (3) provided a scaled stress score for the amount of overall care given to the care recipient (family member). The sample was drawn from the 1982 National Long-Term Care Survey (NLTCS) of individuals who assisted a given NLTCS sample person with ADL limitations.^ The study tests the following hypotheses: (a) There will be a negative relationship between generalized resistance resources (GRRs) and cognitive stress controlling for care demands (demands for care, competing demands, and perceptions of burden); (b) of the specific GRRs (material, cognitive, social, cultural-environmental) the social domain will represent the most significant factor predicting a decrease in cognitive stress; and (c) the social domain will be more significant for the female than the male primary family caregiver in decreasing cognitive stress.^ The study found that GRRs had a statistically significant mediating effect on cognitive stress, but the GRRs were a less significant predictor of stress than perception of burden and demands for care. Thus, although the analysis supported the underlying hypothesis, the specific hypothesis regarding GRRs' greater significance in buffering cognitive stress was not supported. Second, the results did not demonstrate the statistical significance or differences among the GRR domains. The hypothesis that the social GRR domain was most significant in mediating stress of family caregivers was not supported. Finally, the results confirmed that there are differences in the importance of social support help in mediating stress based on gender. It was found that gender and social support help were related to cognitive stress and gender had a statistically significant interaction effect with social support help. Implications for clinical practice, public health policy, and research are discussed. ^