Academic Enhancement site

This off-reservation boarding school serves over 600 students in grades 4-12; approximately 85% of the students reside in campus dormitories. After having documented significant improvement on a number of outcomes during a previous High Risk Youth Prevention demonstration grant, the site submitted a Therapeutic Residential Model proposal, requesting funding to continue successful elements developed under the demonstration grant and to expand mental health services. The site received Therapeutic Residential Model funding for school year 2001-2002. Once funds were received, the site chose to shift Therapeutic Residential Model funds to an intensive academic enhancement effort. While not in compliance with the Therapeutic Residential Model initiative and therefore not funded in subsequent years, this site created the opportunity to enhance the research design by providing a naturally occurring placebo condition at a site with extensive cross-sectional data baselines that addressed issues related to current federal educational policies.     

Level 2 Therapeutic Model site

L2, one of the original sites first funded under the Therapeutic Residential Model Initiative in 2001-2002, is operated as a peripheral dormitory. This dormitory cares for 185 boys and girls in grades 1-12 who attend local public schools. L2 presented an outstanding proposal which identified gaps in services and presented a reasonable budget to address those gaps by adding additional mental health services and increasing the number of residential and recreation staff. With only minor modifications to this budget, the site efficiently and effectively implemented the strategies it had proposed and utilized evaluation feedback to fine-tune systems and maximize positive outcomes. The Therapeutic Residential Model funds enabled the site to move from a functional dormitory to a therapeutic residential situation where the needs of students are assessed and addressed. Outcome indicators in spring 2002, 2003, 2004, and 2005 showed impacts in a number of areas when compared with the baseline year of 2000-2001: Retention of students steadily increased going from 40.7% in 2000-2001 to 68.4% in 2004-2005; 75 students graduated from high school during the four Therapeutic Residential Model years, compared with 41 in the preceding four years; Academic Proficiency and ACT scores improved significantly; Thirty-day cigarette use dropped from 62% in spring 2001 to 38% in spring 2005 among 7th and 8th graders, from 58% to 33% among 9th and 10th graders, and from 72% to 29% among 11th and 12th graders; Alienation indices showed an increase in feelings of inclusion and a decrease in lack of meaning. This site is an outstanding example of what can be done with a well-designed and responsibly implemented Therapeutic Model Program, and the measurable impacts which can result from such strategic use of resources.     

No Treatment Day School

At the No Treatment Day School, less than 15% of students used the dormitory during the school week. Located in the heart of a reservation and serving local students, the K-12 school enrolled over 1,000 students. The site received Therapeutic Residential Model funding for the 2001-2002 school year. Initial evaluation of this site found an array of daunting problems throughout the school structure and functioning. There were some successes, including implementation of the Morningside reading program in the elementary school and some response from the community to the comprehensive evaluation report which provided an overview of the situation to policy-makers and community members. However instability in the system and a mid-year change in leadership complicated the process of implementation. By the end of the first year, it was clear that the feasibility of the original proposal was questionable and that an overhaul of the school's system and culture was necessary before a Therapeutic Residential Model could be implemented or significant change could come about. Therapeutic Residential Model funding was terminated at the end of the school year. As there was no substantial implementation of a Therapeutic Residential Model program, data gathered were utilized as representing a naturally occurring control or minimal treatment site.     

L3 Therapeutic Model site

L3 is an intertribal residential school enrolling approximately 200 students in grades 5-8 from tribes in the northern Midwest. As a result of successful grant-writing which espoused Circle of Courage and Asset-Building, the school built up an impressive configuration of programs funded by a variety of sources, including a cadre of mental health professionals, and began increasingly to rely on their assessments and services. First funded by the Therapeutic Residential Model program in the 2002-2003 school year, L3 used the funding that year primarily to increase professional-level services of a psychiatrist and psychologist, and to maintain or expand programs which would otherwise have been terminated as funding from short-term sources was running out. Evaluation of this project began in January 2003, when the site was assessed and determined to be strongly oriented toward provision of Level Three, or professional-level, psychiatric and medical mental health services. The initial evaluation report identified a low retention rate and raised concerns that the presence of more than 200 staff on campus had resulted in a diffusion of responsibility, lack of consistency, and duplication or redundancy of services; that elements of the environment appeared to be detrimental to social development and emotional stability; and that an unusually high proportion of students were receiving psychiatric diagnoses and medication. The site was asked to address these issues, and additional funding was provided to bolster lower levels of triage by adding paraprofessional case managers to advocate or students and coordinate provision of services for them. Retention remained low at this site throughout the course of funding, and there were a high number of assaults and psychiatric hospitalizations compared with other sites.     

Transfer of staff training from workshops to group homes: a failure to generalize across settings.

Two experiments were conducted to assess acquisition and generalization of skills acquired in a workshop by trainees who were primary caregivers on the staffs of group homes for developmentally disabled clients. In Study 1, 31 staff trainees received an intensive, 1-week workshop in behavioral theory and treatment techniques. When assessed at the workshop site, these staff trainees showed increased treatment skills, relative to 18 staff trainees who did not participate in the workshop. In Study 2, pre- and postworkshop observations were taken on 53 developmentally disabled clients in group homes where the staff trainees worked. These observations provided no evidence that the workshop had any effect on group home client functioning. Future training programs for caregivers may be more successful if they occur in the group home, involve clients in the home, and enlist the support of supervisory staff, rather than focusing only on primary caregivers.     

Caregiving in pediatric epilepsy: Results of focus groups and implications for research and practice

The process of caring for youth with epilepsy (YWEs) has been understudied. Previous research has identified that caregivers of YWEs report increased parenting stress, unanticipated caregiving responsibilities, and negative effects on family life. Using the adapted Caregiving Process Model, perceptions of the caregiving process were explored in four focus groups of caregivers of youth with epilepsy diagnosed at < 1 year, between 1 and 5 years, and > 5 years. Thematic analysis guided the data analysis. The prevalent theme that emerged during the data analysis was navigating the noncontingencies (lack of a perceived relationship between action and outcome, unpredictability). This was supported by the subthemes, namely, blessings and sacrifices, uncertainty today and tomorrow, constant vigilance, and caregiving is more than parenting. The focus groups displayed similarities and differences in caregiving perceptions across the three postdiagnosis time periods, providing support for conceptualization of the caregiving as multifactorial, multidirectional, and fluid process. With this knowledge, epilepsy health-care professionals are encouraged to promote patient and family centeredness, provide information on how to access community resources, and work with caregivers to enhance epilepsy self-management skills.     

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.     

A longitudinal study of coping and burnout among Japanese family caregivers of frail elders

Objectives: The purpose of this study is to clarify causal relations between coping strategies and burnout in family caregivers of frail elders in Japan. Methods: Baseline and 1-year follow-up interviews were conducted with 546 caregivers living in suburban Tokyo. Using newly refined measures, five coping strategies of caregivers (Keeping Their Own Pace, Positive Acceptance of Caregiving Role, Diversion, Informal Support Seeking, and Formal Support Seeking), and caregiver burnout were measured, as well as several confounding factors. Results: After controlling for these confounding factors, results of cross-lagged effects modelling showed that adoption of a Diversion coping strategy decreased caregiver burnout, while increases in burnout decreased caregiver Positive Acceptance of Caregiving Role. Conclusions: The beneficial effect of an Adaptive Avoidance Coping strategy, Diversion, on caregiver mental health was confirmed in this two-wave longitudinal study. The mechanism by which Diversion appears to work is by containing caregiving stressors from completely spilling over into caregivers' personal lives. In addition, we also show that preventing a decline in caregiver mental health (i.e. an increase in burnout) allowed caregivers to more easily embrace the caregiving role and, as a result, elder care-recipients were better positioned to receive high quality care.     

Purpose in Life and Self-Actualization in Agency-Supported Caregivers

When families cannot serve as full-time caregivers for severely, mentally ill family members, agency-supported caregivers provide an alternative to chronic hospitalization. Caregivers who provide 24 hour per day care experience caregiver burden; they also find rewards and meaning in their work. The purpose of this study is to observe positive experiences of paid caregivers for seriously, mentally ill individuals, especially the meaning or purpose it gives their lives and the self-fulfilment or self-actualization that caregiving provides. The caregivers in this study possessed a high purpose in life suggesting that caregiving may give meaning to life. Also, the caregivers of these individuals with severe, mental illness tend to be highly other-oriented (altruistic), an external focus that may decrease their own self-awareness. Thus, caregivers who provide continuous residential care may benefit from therapeutic interventions designed to reinforce self-care skills.     

One extra month of depression: the effects of caregiving on depression outcomes in the IMPACT trial

BACKGROUND: Depression occurs in 5-10% of older adults and there are nearly 6 million informal caregivers aged 65 or older. Prior research has focused on vulnerability to psychological distress in caregivers. Research has not addressed the caregiving burden of depressed elderly patients or how that burden affects depression treatment outcomes. AIMS: To describe the self-reported caregiving burden in a large, representative cohort of depressed elderly patients and compare depression treatment outcomes between caregivers and non-caregivers. METHODS: Univariate and multiple regression analyses were performed comparing 24-month depression outcomes (measured as depression free days) in those providing care at any time over the 24-month trial to those who never reported a caregiving burden. RESULTS: At 3, 6, 12, 18, and 24 months, nearly 10% of cohabitating elderly depressed patients provided care for basic activities such as bathing or dressing while nearly 20% reported providing care for other activities such as making phone calls or taking medication. Over 24 months, after adjusting for marital status, intervention status, and number of medical comorbidities, those reporting any caregiving burden had over 30 more days with depression compared to those with no caregiving burden. The IMPACT collaborative care model did not modify the effect of caregiving on depression outcomes. CONCLUSION: Caregiving is common in depressed older adults and appears to affect response to depression treatment. In the future, interventions for depressed older adults should consider and specifically address caregiving activities in addition to specific depression treatment.     

Predictors of complicated grief among dementia caregivers: a prospective study of bereavement.

OBJECTIVE: Most family caregivers adapt well to the death of their care recipient relative; however, a sizable minority continues to experience postdeath psychiatric morbidity. The purpose of this study was to better understand why some caregivers manifest clinical levels of complicated grief postdeath. This is the first study to prospectively assess predictors of complicated grief among family caregivers of patients with dementia who experience the death of their care recipient. METHOD: The sample of bereaved caregivers is drawn from a larger study of 1,222 family caregivers providing in-home care to their relative with dementia. In-home assessments of caregivers and patients were carried out at baseline and six-month intervals for a total of 18 months. This article is based on the 217 caregivers who experienced the death of their care recipient in the course of the study. Three logistic regression models are tested to identify pre- and postbereavement predictors of complicated grief, including sociodemographic factors, characteristics of the caregiving experience, including participation in a caregiver intervention, other psychiatric morbidities, and medication use. RESULTS: Twenty percent of dementia caregivers evidenced complicated grief along with high levels of depressive symptomatology postdeath. Controlling for sociodemographic factors, caregivers who had high levels of preloss depressive symptoms and burden, reported positive features of the caregiving experience, and were caring for a more cognitively impaired patient were more likely to report clinical levels of complicated grief postloss. In addition, caregivers who were enrolled in a psychosocial caregiver intervention designed to reduce depression and burden reported lower levels of complicated grief. CONCLUSION: This study identifies predictors of complicated grief for which interventions could be developed to not only ease caregiver distress, but also serve as preventive interventions for bereavement. Reducing the burden of active caregiving, treating depression before the death of the loved one and providing supportive psychosocial and skills training caregiver interventions can prevent the emergence of postdeath psychiatric morbidity.     

The families of the institutionalized dementing elderly: A preliminary study of stress in a French caregiver population

The present study describes the development of a measure of stress in the family caregivers of institutionalized dementing elders using a brief two-dimensional scale. Univariate and multivariate analysis of the responses of 257 French adult caregivers to the scale suggest that a year after the admission to care unhappiness is expressed by a third of the population, principally due to exclusion from the caregiving role, financial burden, problems with family and poor contact with staff. Responses appear to be independent of the degree of dementia, the presence of associated pathology in the institionalized elder and recency of admission. Significantly greater satisfaction with care lower levels of stress were reported by caregivers with a relative in non-medical communal care as opposed to a long-stay hospital.     

Premorbid relationship satisfaction and caregiver burden in dementia caregivers

Dementia caregiver appraisal of the quality of their current and premorbid relationship with the care recipient is associated with caregiving behaviors, caregiver mood, and the decision to end home care. This study examined the contribution of premorbid relationship satisfaction to caregiver burden in dementia caregivers. Live-in dementia caregivers (n = 72) completed several psychosocial measures. Caregiver responses were used to divide them into low premorbid relationship satisfaction group (low) versus high premorbid relationship satisfaction group (high). Results indicate that premorbid relationship satisfaction is negatively associated with caregiver burden and quality of family functioning. Caregivers with high satisfaction demonstrated significantly less burden and less reactivity to memory and behavior problems, and better problem solving skills and more effective communication compared with the low caregivers. Findings are independent of length of caregiving, disease severity, care recipient daily functioning, and relationship type. Relationship satisfaction may be an important contributor to caregiver burden.     

Future Involvement of Siblings in the Lives of Persons with Mental Illness

Siblings are considered logical replacements for aging parental caregivers of persons with severe mental illness. For workshops on future planning conducted with 400 elderly parents, 60 siblings answered a survey regarding their future caregiving expectations, anticipated difficulties, and need for help. Nearly all expected to be involved, but were more likely to provide social and emotional support than the instrumental support offered by their parents. Nearly half indicated that the consumer’s hostility and lack of cooperation were major barriers to effective care. It was suggested that siblings need education and help from professionals in assessing behaviors, interacting appropriately, and conferring control of their own lives to their ill relatives. For consumers, social skills and self-esteem training in psychiatric rehabilitation programs should address the area of sibling relationships and reciprocity. Such issues should be dealt with early, rather than later in the course of illness     

Caregiver burden after stroke: towards a structural model

Background and purposeStroke may impose a severe burden on both the patients and their caregivers. Although there is substantial literature relating to the adverse impact of stroke on patients, considerably less is known about its impact on their caregivers. The aim of this study was to analyse predictive factors of the overall burden in caregivers of stroke victims and to verify the structural model of burden, built on the basis of theoretical and empirical assumptions.Material and methodsOne hundred and fifty pairs of patients and their caregivers were evaluated. The Caregiver Burden Scale (CB), Hospital Anxiety and Depression Scale (HADS), Sense of Coherence Scale (SOC), Social Support Scale, Geriatric Depression Scale, Barthel Index and Scandinavian Stroke Scale were all used to evaluate caregiver burden and the characteristics of patients and caregivers.ResultsThe caregivers experienced a moderate burden (mean CB = 2.08) and emotional distress (mean total HADS = 14.1). Path analysis showed that higher burden was associated with a lower SOC score, higher emotional distress, and lower patient's functional status. Higher emotional distress, in turn, was associated with lower SOC and lower patient's functional status. These results show that the burden and the degree of emotional disturbance are two distinct negative consequences of caregiving.ConclusionsThe negative consequences of caregiving depend mainly on the caregiver's intra-psychic factors and the patient's disability. Professional interventions should be targeted at enhancing caregivers’ ability to cope with stress, improving their caregiving skills and reducing the physical dependence of patients.     

Does depression prior to caregiving increase vulnerability to depressive symptoms among caregivers of persons with Alzheimer's disease?

Based on the vulnerability model of depression, this study tested the hypothesis that caregivers with prior depression are more likely to be depressed during caregiving than caregivers without prior depression. We further hypothesized an interaction effect in which caregivers with prior depression would be affected more by care-recipient dependency in activities of daily living and care-recipient depressive symptoms than those without prior depression. In a sample of 111 caregivers of persons with Alzheimer's disease, in an additive regression model, neither 'prior depressive symptoms' nor the clinically more serious 'prior depressive syndrome' was related to depressive symptoms during caregiving. In an interaction model, for caregivers with either 'no prior depression' or 'prior depressive symptoms,' the greater the care-recipient dependencies in instrumental activities of daily living (IADL), the greater were the depressive symptoms during caregiving. For caregivers with a 'prior depressive syndrome', however, the greater the IADL dependency, the fewer were the depressive symptoms during caregiving. This unexpected finding suggests that caregivers with a history of clinically significant depression are not necessarily more prone to depressive symptoms when caregiving responsibilities, at least for instrumental activities, are high. This result questions the vulnerability model of depression when applied to older caregivers.     

Is depression in Alzheimer's caregivers really due to activity restriction? A preliminary mediational test of the Activity Restriction Model

This study is a preliminary examination of the Activity Restriction Model of depressive symptoms. A total of 16 elderly Alzheimer's caregivers and 9 non-caregivers completed measures of activity restriction and depressive symptoms. Mediation was tested using the Sobel test with bootstrapping procedures. Results indicated that caregivers experienced significant elevations in depressive symptoms and activity restriction relative to non-caregivers (p<0.05). Activity restriction significantly mediated the relationship between caregiving status and depressive symptoms (z=2.29, p=0.031), accounting for 86% of this relationship. Behavioral interventions for depression might be particularly relevant for Alzheimer's caregivers to reduce activity restriction and, thus, depressive symptoms.     

Well-being, appraisal, and coping in African-American and Caucasian dementia caregivers: findings from the REACH study

Although there has been considerable interest in racial differences in family caregiving for persons with dementia, most research to date has either ignored racial diversity or based conclusions on small numbers of caregivers drawn primarily from single site studies. The current study utilized participants from four sites of the REACH (Resources for Enhancing Alzheimer's Caregiver Health) multi-site study to compare well-being, appraisal, and religious coping by race. African-American (n = 295) and Caucasian (n = 425) dementia caregivers from four cities (Birmingham, Memphis, Boston, and Philadelphia) were compared in their demographics, care recipient characteristics, mental and physical health, and psychosocial coping resources including appraisal and religious coping. African-American caregivers reported lower anxiety, better well-being, less use of psychotropic medications, more benign appraisals of stress and perceived benefits of caregiving, and greater religious coping and participation, than Caucasian caregivers. Self-rated health did not differ by race, but African-American caregivers reported more unhealthy behaviors than Caucasian caregivers. Some results were specific to site, possibly due to differences in recruitment strategies, inclusion/exclusion criteria, and regional differences. Adjustment for covariates, including caregiver relationship to the care recipient, gender, age, socioeconomic status, and care recipient behavioral problems, altered few of these differences. Results are discussed in terms of their relevance to psychosocial intervention programs for ethnically diverse caregivers.     

High school dropouts: interactions between social context, self-perceptions, school engagement, and student dropout

Research suggests that contextual, self-system, and school engagement variables influence dropping out from school. However, it is not clear how different types of contextual and self-system variables interact to affect students' engagement or contribute to decisions to dropout from high school. The self-system model of motivational development represents a promising theory for understanding this complex phenomenon. The self-system model acknowledges the interactive and iterative roles of social context, self-perceptions, school engagement, and academic achievement as antecedents to the decision to dropout of school. We analyzed data from the Education Longitudinal Study of 2002-2004 in the context of the self-system model, finding that perception of social context (teacher support and parent support) predicts students' self-perceptions (perception of control and identification with school), which in turn predict students' academic and behavioral engagement, and academic achievement. Further, students' academic and behavioral engagement and achievement in 10th grade were associated with decreased likelihood of dropping out of school in 12th grade.