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In family caregiving interventions for adults with health problems, tailoring has become the norm. Studies that evaluate tailored interventions, however, have rarely included intentional variation in dosage or explored the dosage-outcome association. In this Part 1 secondary analysis, we examine dosage and outcomes in intervention families ( N = 116) who participated in the Oregon Health & Science University/Kaiser Permanente Northwest Region Family Care Study. The Family Care Study was a randomized controlled trial to evaluate the preparedness, skill, enrichment, and predictability (PREP) intervention with caregiving families of frail older adults referred for skilled home health. Tailoring of PREP began with assessment by the PREP nurse. Families then identified and selected care-related issues to work on with their PREP nurse; family needs and preferences guided the number and timing of nurse visits and calls. Families selected a median of 3 (range = 0 to 10) care-related issues in five categories: direct care (chosen by 57% of families), transitions (40%), caregiver strain and health (40%), arranging care (33%), and enrichment (22%). The number of issues strongly predicted number of PREP nurse visits and calls, whereas nurse visits in turn predicted caregivers' reports of improved family care and usefulness of home health assistance, highlighting the importance of visits for achieving outcomes. [ Research in Gerontological Nursing, 16 (2), 57-70.].

Family caregivers frequently use health and social services to support their caregiving. In evaluating care-giving interventions, however, researchers rarely examine the influences of such concurrent services on intervention effectiveness. In this Part 2 secondary analysis of data from the Oregon Health & Science University/Kaiser Permanente Northwest Region Family Care Study, we examined the moderating influences of concurrent services on intervention effectiveness. The Family Care Study was a randomized controlled trial to evaluate the preparedness, skill, enrichment, and predictability (PREP) intervention with caregivers of frail older adults referred for skilled home health. Compared with control caregivers receiving usual home health care ( n = 103), PREP intervention caregivers ( n = 104) reported greater improvements in family care (effect size, d = 0.58). We conducted follow-up analyses to determine whether PREP was differentially effective depending on whether dyads received concurrent Social Health Maintenance Organization (SHMO) services, concurrent hospice services, or neither. In the 55% of dyads not receiving SHMO or hospice, we found that PREP's effects were large compared to usual care ( d = 1.16, p < 0.001). PREP's effects were not significant for dyads receiving concurrent SHMO or hospice services. Results highlight the strong benefits of hospice for control dyads, but reveal difficulties in evaluating intervention effectiveness when dyads receive concurrent services. [ Research in Gerontological Nursing, 16 (2), 71-83.].

Family care research has identified negative outcomes of providing care to a spouse with Parkinson's disease (PD), such as declining physical and mental health. Research has also identified protective variables that decrease negative outcomes such as high mutuality and rewards of meaning. It is important for clinicians to identify "at risk" family caregivers and provide earlier interventions. Despite the importance of age and developmental stage there is a paucity of research comparing young versus older spouse caregivers. This study compared the difference in negative aspects of strain and modulators of strain in young and older PD spouse caregivers. A series of hierarchical multiple regressions were used to examine the contribution of age on both positive and negative aspects of the care situation for 65 (37 young, 28 old) PD spouse caregivers. Negative variables included 3 dimensions of strain; strain from lack of personal resources, strain from worry, and global strain. Positive or protective variables included mutuality, preparedness, and rewards of meaning. Even in early stage disease before significant care is required, young spouses (40-55) were found to be at greater risk for negative consequences of the care situation reporting significantly more strain from lack of personal resources, and lower levels of mutuality and rewards of meaning than older (greater than 70) spouses. As expected, young spouses were more likely to be working, caring for children in the home, and in better physical health than older spouses. Clinicians are well-situated to identify the unique needs of young spouses and intervene early in the caregiving trajectory. These findings provide ideas for targeted interventions. Future larger studies that compare young and older spouses should include later stage disease to more fully understand the developmental differences raised by the present findings., (2010 Movement Disorder Society)

Purpose: There is wide variability in how spouses providing care respond to their care situations. Few studies focus on the roles of both intra- and interpersonal factors in long-term spousal care, particularly in the context of Parkinson's disease (PD). The current study uses longitudinal data over a 10-year period to examine the roles of optimism, pessimism, mutuality, and spouse gender in predicting role strain in PD spouses., Design and Methods: A longitudinal design was used to study 255 spouses of persons with PD over a 10-year period, with data points at baseline (Year 0), Year 2, and Year 10. A series of multilevel models were used to examine four role strain variables -- global strain, strain from worry, strain from feelings of being manipulated, and strain from increased tension., Results: Female spouse gender predicted both higher Year 10 role strain and faster increases in role strain over the 10-year period. In addition, high mutuality and optimism and low pessimism at baseline played important protective roles against increased role strain at Year 10., Implications: This study focused on early-stage spousal care in a primarily physical disability context. Findings suggest that gender differences place wives at greater risk for negative outcomes, even in the absence of dementia. Additionally, clinicians have opportunities to target interventions early in the care trajectory based on intra- and interpersonal risk factors.

Mutuality, the positive quality of the relationship between the family caregiver and care receiver, is an important variable in family care for frail older adults. It has been shown to be associated with lower levels of caregiver strain and higher levels of caregiving rewards. However, the concept and measure of mutuality were developed with non-Hispanic White samples. The purpose of this article is to describe the development of an instrument-the Spanish Version of the Mutuality Scale. We determined for Mexican American families: (a) the functional equivalence of mutuality, (b) a comparative descriptive framework for mutuality, and (c) the language equivalence of the Mutuality Scale and the Spanish Version of the Mutuality Scale. Evaluating mutuality levels for Mexican American older adults and caregivers, especially in view of their strong cultural norm of familism, is essential.

Our objective was to understand the impact of motor and nonmotor symptoms of patients with early and middle stage Parkinson's disease (PD) on their spouses' caregiver strain and depression. A sample of 219 spouse caregivers of PD patients participating in a clinical trial was evaluated for six dimensions of caregiver strain and depression using the Family Care Inventory. Motor and nonmotor (i.e., psychological) clinical symptoms collected from PD patients as part of the clinical trial protocol were used as predictors. Seven hierarchical regression analyses were used to determine the contribution of the motor and nonmotor clinical symptoms in explaining variation in each of the seven caregiver-dependent variables. Clinical symptoms explained 9-16% of the variance in caregiver strain and 10% of depression. Motor symptoms explained 0-6% of the variance and nonmotor psychological symptoms explained 7-13% of the variance in caregiver strain. Comparing our findings with literature that is deemed clinically relevant for patient symptoms that predict caregiver strain, we concluded that PD patient symptoms are important predictors of caregiver strain and depression. Patient nonmotor psychological symptoms have a much greater impact on caregiver strain and depression than patient motor symptoms., ((c) 2008 Movement Disorder Society.)

Purpose/objectives: To test a model of family caregiving derived from the interactionist approach to role theory that hypothesized that three caregiving role implementation variables (caregiving demand, mutuality between caregivers and patients, and preparedness for caregiving) would predict multiple caregiving-specific and generic outcomes with different patterns of association across outcomes., Design: Descriptive, correlational., Setting: Surgical, radiation, and medical oncology settings., Sample: 87 family caregivers of adults receiving treatment for solid tumors or lymphoma., Methods: Caregivers completed the Demand and Difficulty subscales of the Caregiving Burden Scale; the Mutuality, Preparedness, and Global Strain scales of the Family Care Inventory; and the 30-item short form of the Profile of Mood States. Data were analyzed with simultaneous multiple regression., Main Research Variables: Caregiving demand, mutuality, preparedness, caregiving difficulty, global caregiver strain, tension, depression, anger, fatigue, vigor, confusion, and total mood disturbance., Findings: The model explained statistically significant proportions of variance in each outcome, with different patterns of association across outcomes. Demand was associated most strongly with caregiving difficulty and global strain. Mutuality was associated most strongly with caregiver anger. Unexpectedly, preparedness was associated more strongly with mood disturbance outcomes than with the caregiving-specific variables of difficulty and strain., Conclusions: Further research should explore models that address implementation of the caregiving role to better elucidate how family caregivers learn and carry out the important role., Implications for Nursing: Clinical assessment should include caregiving demand, the quality of the relationship between caregiver and patient, and preparedness for caregiving. Interventions could be tailored to meet caregiver needs in each area.

Background: Family caregiving researchers have explored the moderating or stress-buffering effects of variables such as coping and social support. However, the quality of the family caregiver-patient relationship and preparedness for caregiving have received little attention as potential moderators., Objective: To explore whether relationship quality and preparedness moderate the effects of caregiving demand on caregiver outcomes during cancer treatment., Methods: Eighty-seven family caregivers of patients receiving treatment for cancer completed the Demand and Difficulty subscales of the Caregiving Burden Scale, Mutuality and Preparedness Scales of the Family Care Inventory, and the short form of the Profile of Mood States. Using hierarchical multiple regression analyses, caregiving difficulty and total mood disturbance were regressed on two- and three-way interaction terms for demand, mutuality, and preparedness, controlling for caregiver age and gender, and the simple effect of each independent variable., Results: Negligible effects for two-way interactions were found. However, the three-way interaction between demand, mutuality, and preparedness explained statistically significant variance in both perceived difficulty of caregiving and total mood disturbance. High mutuality in combination with high preparedness protected caregivers from adverse outcomes when demand was high. When either mutuality or preparedness was low, caregivers were at greater risk for negative outcomes when demand was high, but not when demand was low. When both mutuality and preparedness were low, caregivers were at risk for mood disturbance even when demand was low., Discussion: Analysis of three-way interactions provided new theoretical insights into the protective effects of mutuality and preparedness and demonstrated conditions under which caregivers are at increased risk for negative outcomes.

Mutuality is a protective factor in family care situations, but little is known about changes in care-dyad mutuality. In this study, we examined mutuality in 103 care dyads over 20 months, and the enduring and contextual impact of older adult and family caregiver health on changes in mutuality. Care dyads consisted of frail older adults and their family caregiver. Older adults reported higher levels of mutuality than family caregivers, but their mutuality declined significantly faster over time. Although changes in physical health were more important than mean health for both older adults and family caregivers, mean depression was more important than changes in depression for older adults. This study shows the importance of examining time-varying covariates in the care dyad.

In this validity study, using factor analysis, the authors identified three dimensions (affection, skill, and attentiveness) of the Care Receiver View of Caregiver Role Enactment Scale, a self-report measure designed to elicit an elderly care receiver's evaluation of how well their family member carried out the role of caregiver. The scale is a revision of the Satisfaction With Caregiving Scale. This study was a secondary analysis of data from PREP: Family-based Care for Frail Older Persons. Care receiver mutuality was the variable most highly correlated with caregiver role enactment. Other variables related to good quality care were higher care receiver positive affect, better caregiver physical health, and lower caregiver role strain; husband caregivers were rated as giving poorer quality care.

Background: Although pessimism and optimism are associated with health-related outcomes, the long-term effects of pessimism and optimism in the caregiving process are understudied, and little is known about their role in health changes over time., Objective: To determine whether pessimism and optimism can be used as early warning signs for negative changes in caregiver depressive symptoms and physical health over a 10-year period., Methods: Multilevel modeling was used to examine longitudinal data from 311 spouse caregivers of individuals with Parkinson's disease, with data points at baseline, Year 2, and Year 10. Measures included the Life Orientation Test, the Center for Epidemiological Studies-Depression Scale, and the SF-36 Health Survey physical functioning scale., Results: Caregiver pessimism early in the caregiver role was found to be a warning sign for poor current and future caregiver health. High baseline pessimism signaled high levels of baseline depressive symptoms and poor physical health, as well as a faster decline in health over the 10-year study. Optimism played a role in predicting baseline depressive symptoms, although the magnitude of its beneficial contribution was not as great as the deleterious effects of pessimism., Conclusions: Nurses and clinicians have a unique opportunity to detect and intervene with caregivers who show high levels of pessimism early in the caregiving trajectory.

Two common pitfalls of longitudinal research are loss of participants over time and inability to locate participants whose contact information has changed. This article is based on our experiences in locating and retaining a sample of caregivers of persons with Parkinson's disease 8-10 years after we last contacted them. The strategies we used resulted in locating 86% of our sample and retaining 80% of those who were eligible. These strategies included asking participants for a backup contact, asking participants if they would be willing to be contacted again for a future study, making the most of existing search engines, keeping in touch, and being flexible, patient, and professional., (Copyright 2004 Wiley Periodicals, Inc.)

Purpose: To describe the concepts of role strain and role satisfaction (renamed ease in decision-making following analysis) experienced by family caregivers when making decisions to withdraw or withhold life support for elderly relatives in a variety of settings., Methods: Semi-structured interviews were conducted with 17 family caregivers to obtain descriptions of their experiences when making decisions about life support for elderly relatives. Content analysis was used to analyze the data., Findings: Role strain was complex, dynamic, and multidimensional, and it evolved over time before, during, and after decision-making about life support. Role satisfaction, the concept name used at the beginning of the study, did not match descriptions or the experience of family caregivers, and a revised name, ease in decision-making, was selected., Conclusions: The concepts of role strain and ease in decision-making have not previously been used in studies of decisions about life support. Both role strain and ease in decision-making augment the existing literature on role strain in family care by providing a more complete picture of caregivers' responses during their experience of making life-support decisions. Research focused on the measurement of strain and ease in decision-making is needed to understand their interrelationship as well as their association with such variables as caregiver grief and health.

Although several definitions and categorizations of home environmental modification strategies exist, previous researchers have not addressed whether the conceptualizations developed by clinicians and researchers match the way families think about how they modify the home environment in order to provide care to frail elders. The aim of the analysis reported here was to describe, from the family's perspective, the home environmental modification strategies that they use. Twenty-four caregivers of community-dwelling elders with a variety of impairments were interviewed. Seventeen families provided guided tours of the elder's home and allowed selected observation of some caregiving activities. Forty-four modification strategies were identified and categorized into one of seven home environmental modification purposes: organizing the home, supplementing the elder's function, structuring the elder's day, protecting the elder, working around limitations or deficits in the home environment, enriching the home environment, and transitioning to a new home setting. More research is needed on the processes families use to generate and refine the home environmental modification strategies identified in this study., (Copyright 2002 Wiley Periodicals, Inc.)

Families increasingly are expected to provide complex care at home to ill relatives. Such care requires a level of caregiving knowledge and skill unprecedented among lay persons, yet family caregiving skill has never been formally developed as a concept in nursing. The purpose of the study reported here was to develop the concept of family caregiving skill systematically through qualitative analysis of interviews with patients (n = 30) receiving chemotherapy for cancer and their primary family caregivers (n = 29). Open coding and constant comparison constituted the analytic methods. Sixty-three indicators of caregiving skill were identified for nine core caregiving processes. Family caregiving skill was defined as the ability to engage effectively and smoothly in these nine processes. Properties of family caregiving skill also were identified. Conceptualizing skill as a variable and identifying indicators of varying levels of skill provides a basis for measurement and will allow clinicians to more precisely assess family caregiving skill., (Copyright 2000 John Wiley & Sons, Inc.)

The extensive care provided by families to their elderly relatives in the home is well documented. Although family caregiving is likely to be continued during hospitalization of elderly relatives, limited research has been conducted to address the nature of family care for hospitalized elders. The main purpose of this qualitative study was to refine the content domain of family care for hospitalized elders. Altogether 25 interviews were done. Of the 16 participants, 6 were family members, 6 were patients, and 4 were nurses; 7 participants were interviewed once and 9 participants were interviewed twice. Qualitative analysis based on Lofland and Lofland's (1984, 1995) approach resulted in the identification of three major content domains: family members providing care to the patient, working together with the health care team, and taking care of themselves. This typology suggests a shift of research in this area from its current focus on family needs to a view of family caregivers as partners with the health care team., (Copyright 2000 John Wiley & Sons, Inc.)

Purpose: To review progress in the conceptualization and measurement of five concepts related to doing family caregiving well: caregiving mastery, self-efficacy, competence, preparedness, and quality. Families are increasingly involved in providing complex care to ill or aged family members at home. Their ability to do caregiving well is vitally important and a focus of nursing practice in many clinical settings., Organizing Framework: Concepts were organized into two groups: those that refer to caregivers' perceptions of how well they are providing care and those that refer to professional assessment of the quality of care provided., Sources: Family caregiving literature from nursing, gerontology, psychology, and social work, 1987-1996., Findings: There is growing interest in doing family caregiving well. However, research in this area is limited by the current state of development of ideas and measures., Conclusions: Two issues that should be addressed to advance research are the perspective taken on doing caregiving well and change over time in doing caregiving well.

The objective of this study was to examine the experience of spouses caregiving for their spouse with Parkinson's disease (PD) and to determine whether their experiences differed by stage of disease. By using a cross-sectional design and mail questionnaire data from 380 spouse caregivers across 23 sites of the Parkinson Study Group, key caregiver variables were examined by stage of PD. Three categories of variables--caregiver role strain (10 measures), caregiver situation (four measures), and caregiver characteristics (four measures)--were analyzed by using t tests with Bonferroni correction. Specific types and amounts of role strain accumulated as the disease progressed, and they differed significantly between stages (p < 0.05). In the caregiving situation, the mean number of caregiving tasks tripled by stage 4/5. Negative changes in lifestyle plus decreases in predictability in caregivers' lives increased significantly in late-stage disease (p < 0.05). Caregiver characteristics of physical health and preparedness did not significantly differ across stages of disease. Depression was significantly higher by stage 4/5. Mutuality, the positive quality of the relationship as perceived by the caregiving spouse, declined beginning at stage 2. Caregiver strain is experienced across all stages of PD and accumulates significantly as the disease progresses. This study defines types and amounts of strain by stage of disease, which will be helpful in designing formal intervention trials to provide more effective help for spouse caregivers.

The purpose of this pilot study was to refine and evaluate methods of measuring costs of an innovative home-health nursing intervention designed to support frail, older persons and their family caregivers. We evaluated a multifaceted strategy to collect a detailed utilization profile from 22 caregiver/care receiver dyads for hospital, ambulatory, home health, nursing home, and community services. The strategy was feasible for most participants, maximized accuracy of cost data, and minimized research burden on study participants. Lower overall costs were found in the intervention group, but the difference was not significant. Approaches to the measurement of costs in this study can serve as models for evaluating other innovations in nursing, home care, and long-term care.

Families now provide most of the care received by older people in the United States. Proposed changes in the health care system will mean that families must take an even greater role in delivering health care. It is crucial that nurses practicing in a variety of settings be prepared to establish partnerships with family caregivers in order to attend to the long-term care needs of older people.

The PREP system of nursing interventions, designed to increase preparedness (PR), enrichment (E), and predictability (P) in families providing care to older people, was pilot tested for acceptability and preliminary effectiveness. Eleven family units were assigned to the PREP group and 11 to a standard home health control group. The PREP group scored approximately one SD higher than the control group (p < .05) on the Care Effectiveness Scale, indicating greater preparedness, enrichment, and predictability. Further, on a rating of overall usefulness, the PREP group rated their assistance from PREP nurses (M = 9.75) as significantly higher (p < .01) than the control group rated assistance from the home health nurse or physical therapist (M = 6.57). Although not statistically significant, mean hospital costs for the PREP group ($2,775) were lower than for the control group ($6,929). Results provided support for a full intervention trial.

Interview and observational data obtained from caregiver-care recipient dyads were analyzed in developing a theory of enrichment that explains how some families use pleasurable or meaningful experiences in their caregiving to frail elders. The personal history and frailty trajectory of both caregiver and care recipient, the quality of the dyadic relationship, and the caregiving situation are antecedents to enrichment processes. Core elements influencing the nature of enriching events include acquiring symbolic meaning, performing activity, and fine tuning. Categories of enrichment events are customary routines and innovative routine breakers. Consequences of enrichment are relationship and identity sustenance for both caregiver and care recipient, comfort for the care recipient, and rewards of meaning for the caregiver.

1. The concepts of local and cosmopolitan knowledge may be used by gerontological nurses in creating partnerships with family caregivers to frail older people. 2. Local knowledge is the understanding and skills that the family brings to the caregiving situation; cosmopolitan knowledge is the understanding and skills that the gerontological nurse brings to the situation. 3. Four nursing interventions are guided by the conceptualization of local and cosmopolitan knowledge: acknowledging and affirming local knowledge when it is adequate; developing or enhancing local knowledge when it is inadequate; assisting family caregivers to apply local knowledge to problem solving; and blending local and cosmopolitan knowledge.

The study reported here explored similarities and differences between 103 family caregivers of older persons who had been discharged from the hospital and 70 caregivers of terminally ill older persons receiving hospice care. Caregiving variables were selected for examination based on role theory. Major findings include: hospice caregivers provided significantly more personal care and medically related tasks, significantly fewer transportation tasks, and worried less than the post-hospitalized sample. Otherwise, the two groups were strikingly similar. Similar patterns of correlations for the two groups were also found.