Outpatient comprehensive geriatric assessment programs (CGA) are interdisciplinary specialized geriatric services providing assessment, diagnosis, short-term treatment, brief counseling, education, and support to older adults with multiple and complex medical and social problems. The systematic reviews of effectiveness of these programs have shown their great potential in promoting positive patient outcomes (Wieland, 2003). However, the results have not been consistent across studies. The success of these short-term outpatient services largely depends on the patients' understanding of assessment findings and recommended treatment plan, and their motivation and resources to follow the recommendations (Aminzadeh, 2000; Aminzadeh, Amos, Dalziel, & Byszewski, 2002).
Family members play a key role in the care offrali older adults in the CGA setting - they provide valuable information contributing to the assessment and diagnosis of conditions and assist with the implementation of recommended discharge plans. The role of family caregivers is particularly important in the care of cognitively impaired older individuals. However, the provision of care to frail older adults with multiple impairments is often associated with a host of stressful demands and "dislocations" in many spheres of the caregivers' lives (Canadian Study of Heath and Aging Working Group [CSHA] 1994; Gignac & Gottlieb, 1996; Oy, Hoffman, Yee, Tennstedt, & Schulz, 1999; Zarit & Leitsch, 2001). Considerable evidence indicates that caregiver stress and burden not only affects caregivers' health and quality of life, but also it may have a negative effect on patient outcomes (CSHA, 1994; Houde, 1998; Ory et al., 1999; Tsuji, Whalen, & Finucane, 1995; Zarit & Leitsch, 2001).
Nurse walking with patient in a day hospital during an outpatient visit.
To date, the evaluative studies of outpatient CGA programs have typically measured "macro-outcomes" of care (e.g., health and functional status, service utilization, mortality) (Bradley et al., 2000). These outcomes, although relevant to policy planning, have been criticized for their limited scope and neglect of other equally important and clinically relevant short-term goals of care expressed by patients and families (Bradley et al., 2000). For example, in two recent qualitative studies of goal setting in the care of dementia patients in outpatient CGA programs, family caregivers' most commonly expressed goals were obtaining education, information, or referral; enhancement of social and family relationships; and improved patient safety (Bogardus, Bradley, & lineto, 1998; Bradley et al., 2000).
A need for more research to better understand the goals and outcomes of family caregivers of cognitively impaired patients in the CGA setting exists. This knowledge can facilitate effective communication and promote meaningful participation of the family in the process of assessment and care planning. This can, in turn, enhance satisfaction and improve adherence to the recommended treatment plan - ultimately, resulting in better patient and caregiver outcomes (Bogardus et al., 1998, Bogardus, Bradley, & Williams, 2004; Bradley, Bogardus, Tmetti, & Inouye, 1999; Bradley et al., 2000).
This study was part of a larger prospective evaluative research study in an outpatient consultative geriatric day hospital. This article presents the results related to the following study objectives - to explore the goals and needs of informal caregivers on admission to the program, and to examine the caregivers' evaluation of program effectiveness in meeting their goals and needs 4 months after discharge.
Sample and Setting
The study targeted all eligible informal caregivers (i.e., family and friends) of patients referred for an assessment of their cognitive status to an outpatient CGA program in a teaching facility, in Ottawa, Canada, between May 2001 and September 2002. To be eligible, the caregiver had to be an unpaid helper of the patient who assumed major responsibility for providing supervision, assistance, or support on a regular, ongoing basis (minimum of once a week) with personal, health care, instrumental, or psychosocial tasks.
On the initial visit to the day hospital, a nurse case manager and a geriatrician completed a thorough assessment of the patient and made referrals to other disciplines in the day hospital. These included social work, occupational therapy, speech pathology, neuropsychology, physiotherapy, pharmacy, and dietary services. The day hospital assessment and intervention process took an average of six weekly visits each lasting approximately 3 hours. The informal caregivers were encouraged to be actively involved in the process of assessment, goal setting, and treatment planning. In addition to the ongoing education and support provided throughout the process of assessment, upon completion of the program, a family conference or a summary session was arranged to:
* Inform patient and caregivers about the final findings of assessment and cognitive diagnosis.
* Discuss the recommended interdisciplinary discharge plan (including referrals to appropriate community support services).
* Address patient and caregivers' questions and concerns.
* Provide support to patient and caregivers to make necessary decisions and plan for the future. Patients and caregivers also were provided with an individualized written summary of the interdisciplinary findings and recommendations.
Data were collected through three sources:
* Self-administered, semi-structured baseline questionnaires completed by informal caregivers on the first or second visits to the day hospital.
* Review of patients' health records on discharge.
* Follow-up, semi-structured questionnaires mailed to caregivers approximately 4 months after discharge (± 2 weeks). The study protocols were approved by The Ottawa Hospital Research Ethics Board.
The study questionnaire was developed based on an extensive review of the literature and included both open-ended and close-ended questions. For example, two sets of questions were asked to elicit information on caregiver needs and goals. First, using an open-ended question adapted from Bogardus et al (1998), caregivers were asked to identify their top three assessment goals for themselves or for patients. Additionally, caregivers were asked to mark their needs from a list of commonly expressed educational, support, and care management needs derived from the literature (Aminzadeh, Byszewski, Dalziel, & Amos, 2002; Zarit & Leitsch, 2001).
Data Coding and Analysis
Using content analysis, a classification scheme was developed to code caregiver assessment goals. Initially, the first 20 questionnaires were content analyzed by the first author to develop the draft scheme. This was carefully reviewed and approved by the second and third authors. To ensure reliable coding, the first 20 questionnaires were coded separately by the first two authors using the draft coding scheme. An agreement of 85% was achieved (r = .77). The coded questionnaires were then carefully reviewed by the third author and a meeting was held among the three authors to finalize the classification scheme. The remaining questionnaires were coded by the first author only. Descriptive statistics were used to summarize the results.
Qf 176 eligible patient-caregiver dyads who entered the program, 141 completed the study, yielding a response rate of 80.1%. The average age of patients was 82.0 years (SD = 6.0, range = 62 to 94). The majority of patients were women (67.4%), spoke English (81.6%), had some secondary school or higher education (84.4%), and lived at home with a relative (66.0%). Most patients suffered from dementia (76.6%), and 15.6% had mild cognitive impairment.
The majority of caregivers were women(61.7%),married(79.4%), spoke English (83.7%), had postsecondary or higher levels of education (61.9%), and had a close kinship relationship with the patient (86.5%). The average age of caregivers was 60.1 years (SD = 13.8, range = 36 to 95), with 44% being a senior citizen themselves. Most caregivers were self-identified as the primary helper (86.5%), assuming major responsibilities for the provision of emotional support and instrumental assistance on a regular, ongoing basis, particularly related to more complex household and outside activities. Furthermore, nearly half of caregivers were the sole provider of informal care (48.2%), shared a household with patient (44.7%), assisted with personal care tasks (40.4%), and committed 5 to 30 hours of weekly assistance (49.6%). A minority (26%) provided more extensive hours of care, surpassing an average of 30 hours of assistance per week.
In addition, 38.3% of the patients used formal public or private personal/ home support services on admission. However, nearly half of the service users received a very modest amount of less than 2 hours of weekly assistance. Not surprisingly, many caregivers (41.1%) believed that the help they received from formal sources was insufficient, and identified the need for more publicly funded personal/home support services. The same proportion also felt that they were not receiving enough help from family and friends.
Caregiver Coals and Needs on Admission
The vast majority of caregivers (90.1%) expressed at least one assessment goal for themselves or for the patient The content analysis of caregiver goals revealed eight broad categories which are presented in Table 1. The most common goal category, cited by slighdy more than half of caregivers (51.1%), pertained to the evaluation of patient conditioa This was followed by the goals related to the management of patient care (38.3%), and the treatment or resolution of patient health problems (33.3%). Most caregiver goals focused on patient needs, with only 9.9% of caregivers expressing goals specifically related to their own coping and emotional needs.
Consistent with the stated goals, the most frequently selected items from a pre-established list of needs (Table 2) pertained to caregivers' learning needs related to the management of patient care (79.4%), the understanding of patient illness (78%), and the awareness of available community services (74.5%). Once again, the only item that specifically focused on caregivers' needs to better care for themselves, was the least frequently endorsed item (49.6%).
Caregiver Evaluation of Program Outcomes at Follow Up
The majority of caregivers provided positive evaluations of various aspects of program and reported important benefits. Table 2 shows the caregivers' endorsement of a list of 1 1 potential program outcomes, including the six items initially presented in the Caregiver Need Checklist completed on admissioa As shown, more than 60% of caregivers felt they benefited from the program related to all items in the list. The two most frequently selected positive outcomes, selected by more than 80% of the sample, were learning about patient illness and learning about available community services. Overall, 83% of caregivers felt the program met their needs.
CAREGIVER ASSESSMENT GOALS ON ADMISSION (W = 141)
Moreover, at follow up, more than two-thirds of all assessment goals expressed by caregivers on admission were partially or fully attained. The best goal-specific outcomes reported were related to the evaluation of patient condition (93.8%), obtaining advice or decision support concerning the management of patient care (87.5%), and enhanced caregiver coping (78.6%). In contrast, the least favorable evaluations were made related to the goal of obtaining treatment or resolution of patient health problems, with only approximately two-thirds (66.7%) of caregivers reporting benefits.
Finally, a review of caregivers' narrative comments revealed their great satisfaction with the quality of care provided (i.e., the compassion, caring, and professionalism of staff and the depth and breath of assessment), and re-emphasized the outcomes most valued by caregivers (i.e., information, care advice, assistance with problem solving, emotional and decisional support). Below are some illustrative comments:
* "It was an expert comprehensive assessment by compassionate staff that my mother trusted and related to."
* "Assessment was very thorough and thoughtful; by the time we arrived at the unit, I was very needy, feeling confused and overwhelmed. I really appreciated the support offered by the nurse. She listened to me and offered suggestions. She treated Mom with exquisite courtesy."
* "This program has helped our family a great deal in coping with father s illness by trying to improve his quality of life, and prepared us for what's more to come."
With the population aging and the increase in life expectancy, cognitive impairment has become a growing public health concera Most older adults with cognitive impairment live at home, and are supported by their spouse, adult children, and other relatives, many of whom are older adults themselves (CSHA, 1994). CGA programs can play an important role in improving the quality of life of cognitively impaired older adults and their informal caregivers. Synergies can be achieved in these programs by simultaneously targeting patients' needs and providing education and support to caregivers. These findings have important implications for future research and clinical practice to enhance the care of patient-caregiver dyads in this setting.
It has been proposed that the approach to chronic illness management should be characterized by participation, individualization, negotiation, facilitation, and support (Resnick, 1999). Comprehensive care of older adults often involves multiple formal and informal caregivers, each with potentially different views about appropriate goals and the best course of action. Therefore, some authors have recommended an explicit discussion of goals of care on admission, after the disclosure of diagnosis, and at other important transition points in the trajectory of care (Bogardus et al., 1998, 2004; Bradley et al., 1999; Zarit & Leitsch, 2001). Collaborative goal setting is particularly important in managing chronic conditions, such as dementia, in which a cure may not be an option. For these conditions, the success of interventions largely depends on whether the goals and plan of care are consistent with the patients and caregivers' expectations (Bogardus et al., 1998, 2004; Bradley et al., 1999; Zarit & Leitsch, 2001).
This is an area where nurses can make a significant contribution in the CGA setting. As case managers and coordinators of care, nurses meet with the patient-caregiver dyads on their first visit to the program In collaboration with the geriatrician, they identify the patientcaregiver priority needs, and they coordinate the interdisciplinary assessment process, including the final family conference when the findings and discharge plan are discussed. Throughout this process, nurses are in a unique position to:
* Discuss the goals of care with patient-caregiver dyads.
* Promote effective communication and collaborative goal setting.
* Provide opportunities to educate the dyads on what are realistic goals and available options.
CAREGIVER EXPRESSED NEEDS ON ADMISSION AND EVALUATION OF PROGRAM OUTCOMES AT FOLLOW UP (N =141)
* link the recommended discharge plan with the dyads' expressed desired outcomes.
The finding that the vast majority of caregivers (90.1%) in this study expressed at least one assessment goal on admission echoes the results of recent qualitative studies in outpatient CGA programs indicating that the concept of goal setting is quite understandable and relevant to most caregivers (Bogardus et al, 1998; Bradley et al, 2000). Consistent with the scope of an outpatient CGA program, the most common goal category, expressed by more than half of caregivers, pertained to the evaluation of patient condition. This was followed by goals related to the management of patient care (i.e., information, advice, problem solving, decision support).
These findings are also congruent with the results of two recent qualitative studies in this setting, indicating that caregivers are more likely to express immediate and process-oriented goals related to the day-to-day management of patient care, rather than the goals associated with health and functional outcomes typically assessed in health service research (Bogardus et al., 1998; Bradley et al., 2000).
It has been reported that most caregiver goals focus on the patient rather than on the caregivers themselves (Bradley et al., 2000; Zarit, 1990). Typically, caregivers want to learn how to treat, manage, care for, and control the care recipients' condition rather than how to cope with their own feelings and behaviors (Zarit, 1990). They seem to be more concerned with the goal of improving their effectiveness as caregivers than with decreasing their current levels of distress.
In a qualitative study of 226 consecutive sets of patients with dementia and their caregivers in an outpatient CGA program (Bradley et al., 2000), only 10% of family caregivers expressed caregiver burden as the focus of their goals. An identical proportion of caregivers in the present study expressed goals related to their own coping and seeking help in handling their feelings. This finding suggests the need for nurses to explicitly discuss with the caregivers their objective caregiving demands, their coping skills, and their subjective perception of burden.
Another finding of interest in the present study was the emergence of a new category of goals related to service delivery issues. The stresses related to interaction with the health care system, and the caregivers' efforts to ensure service quality, coordination, and continuity have been reported previously (Sussman, 2003). A minority of caregivers in this study (7.1%) expressed assessment goals of this nature on admission to the program.
At 4-month follow up, more than two-thirds of all assessment goals expressed by caregivers on admission were partially or fully attained. The most positive goal-specific outcomes were related to the evaluation of patient condition (93.8%) and the least positive outcomes pertained to the goal of obtaining treatment or resolution of patient health problems (66.7%). Although a systematic evaluation of the appropriateness of caregiver goals was beyond the scope of this study, it was noted that some of the goals in the latter category were unrealistic considering the chronic and degenerative nature of the conditions for which caregivers expressed the goal of obtaining a treatment or a cure. A complete resolution of a health concern may not be a realistic intervention goal in CGA settings, which often address chronic and progressive illnesses in frail older adults. Rather, more reasonable clinical goals in this setting may be slowing the progression of disease or disability, improving care management, and lessening the effect of impairment on patient-caregiver dyads. This finding provides further support for the importance of a discussion of assessment goals with patientcaregiver dyads on admission.
Consultative CGA programs often encounter patient-caregiver dyads in the early stages of disease process, when patients are first referred for an evaluation of their cognitive impairments. As shown in this study, the majority of these patients are given a diagnosis of dementia or mild cognitive impairment (which could progress to dementia). As evidenced by past research (Bogardus et al, 1998; Bradley et al., 2000; Donaldson & Burns, 1999; Zarit & Leitsch, 2001) and the findings of this study, the most common needs and goals expressed by caregivers at this stage focus on:
* Understanding patient illness (i.e., diagnosis, natural history, prognosis).
* Learning about available treatment options.
* Obtaining advice and decision support related to the present and future management of patient care.
* Learning about (or accessing) available support services to help with various aspects of patient care.
The findings of this study point to the relative success of the program in meeting these categories of needs and goals expressed by most caregivers.
However, after the initial information needs have been addressed, caregivers often require additional supportive care interventions, such as training in problem-solving skills and day-to-day management of patient care, and the mobilization of formal and informal support network to assist with patient care (Schulz et al., 2002). Based on the results, the program was less effective in responding to this type of ongoing supportive care needs of patient-caregiver dyads. To improve the outcomes of care, it is critically important that the short-term outpatient CGA programs help create a continuum of support services after discharge (Aminzadeh, Byszewski, et al., 2002).
Although patient care is often the primary responsibility of a single caregiver, the patient-caregiver dyad is embedded in a wider network of family and friends, which could have different perspectives on the extent of problem and possible solutions (Zarit & Leitsch, 2001). Therefore, to be maximally effective, nurses in CGA programs should consider the effect of this wider network of relationships, include key members in the assessment and diagnosis process, and rally for their participation in sharing the responsibility of patient care. In this study, approximately two-thirds of caregivers felt the program was at least partly successful in improving their collaboration with other family members in meeting patients' needs. This area of intervention for nurses has great potential for improvement.
Finally, patient-caregiver dyads and their informal network function within a larger social and policy environment, which includes the availability of affordable and quality support services within the community (Zarit & Leitsch, 2001). Thepotential effect of consultative CGA programs can be significantly limited by the lack of availability of such services. These specialized programs are maximally effective when complementary community-based support services are available to meet the ongoing needs of patient-caregiver dyads after the disclosure of a diagnosis of cognitive impairment or dementia (e.g., personal/home support services, day away programs, respite care, rehabilitation services, caregiver educational and psychosocial counseling services).
In this study, family caregivers provided the bulk of care to patients on admission to the program. Many of these family caregivers felt that they did not receive adequate help from community support services, mainly because of the restrictive eligibility criteria and limited availability of the services in this regioa CGA programs should advocate for the increased availability of community support services and more timely access to these services after the discharge from the specialized programs.
The findings of this study confirmed the benefits of consultative CGA programs for the caregivers of patients experiencing cognitive decline. The program was successful in providing various types of support to caregivers, particularly in the domains of emotional, informational, advice, and decision support. These positive outcomes were highly valued by caregivers and were mostly consistent with their assessment goals expressed on admission. This finding re-affirms the importance of inclusion of these more process-oriented and clientfocused goals of care in future evaluative studies of effectiveness of outpatient CGA programs.
In addition, more in-depth studies of assessment goals of various groups of patient-caregiver dyads are recommended to examine the extent to which these goals are specific and measurable, realistic, and consistent with the goals expressed by clinicians in this setting, and to determine whether any associations exist between various goal attributes (e.g., specific versus general, concordant versus discordant with clinician goals) and the clinical outcomes achieved. Finally, this study examined needs and goals of informal caregivers early in the process of cognitive assessment and the disclosure of a diagnosis of dementia. Longitudinal studies are needed to better understand the evolving needs and goals of patient-caregiver dyads over time.
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CAREGIVER ASSESSMENT GOALS ON ADMISSION (W = 141)
CAREGIVER EXPRESSED NEEDS ON ADMISSION AND EVALUATION OF PROGRAM OUTCOMES AT FOLLOW UP (N =141)