Family Involvement in Care Study

Tools and Instruments Used in the Study

There are several tools and instruments which are utilized in this study to obtain information from staff members, family members/friends, and residents. Several of the tools have been created over the course of the study by the study investigators and consultants. Brief descriptions of each of the instruments used in Phase III of the study are listed below. Further information on each instrument (e.g., validity and reliability) can be obtained by contacting the project director or either of the co-principal investigators. Names, addresses, phone numbers, and e-mail addresses of these people are listed under the Staff link.

Staff Instruments
The Caregiver Stress Inventory (CSI) is a 43 item, self-report tool developed to determine

(1) whether staff on special care units experience less stress than those on integrated units, and

(2) which resident behaviors are reported as occurring less often and/or being less stress-inducing on each type of unit.

It is used to measure the stress that is

(1) associated with resident behaviors,

(2) related to staff knowledge, abilities, and resources, and

(3) related to inadequate physical care for residents.

Staff caregiver stress is defined as the response that individual staff caregivers experience to incidents that occur in the daily care of residents with Alzheimer's disease. Responses, based on current perceptions of stress, are rated on a seven point Likert-type scale (1=not stressful, 7=very stressful). Stressful incidents include behavior that is verbal, physical, emotional, or social in nature.

The CSI questionnaire was developed by Maas and Buckwalter from 'critical incidents' reported as stressful by nursing home staff caring for residents with Alzheimer's disease. A 64-item questionnaire was originally created from these 'critical incidents' and pretested on a sample of nursing home employees (n=50), drawn from the same setting from which the 'critical incidents' were collected. Item-total correlations were calculated and the items were factor analyzed with data from 300 nursing home staff. As a result of this analysis, the instrument was reduced to 50 items representing three subscales: (1) Patient Verbal/Physical Behavior (18 items), (2) Patient Emotional/Social Behavior (20 items), and (3) Knowledge/Abilities/Resources of Staff (12 items). Following the development of other instruments, the original CSI was revised by deleting items that measured the same variables as were measured in the Attitudes about Families Checklist (AFC) and the Staff Perceptions of Caregiving Roles (SPCR).

The General Job Satisfaction Inventory (GJS) contains three items that are included in the Job Diagnostic Survey and are identified as an overall measure of the degree to which personnel are satisfied with their job. Internal consistency reliability has been reported as .77.

The Knowledge of Alzheimer's Test (KAT) is a 33 item instrument used to assess the information individual staff possess regarding Alzheimer's disease. The format for each item is true/false.

The original KAT contained 20 items and was developed at the Dementia Clinic, Department of Neurology, The University of Iowa Hospitals and Clinics. It was administered to individual staff of the nursing home and was divided into three subscales to determine the individual level of knowledge possessed regarding:

(1) the etiologic pathology of Alzheimer's disease,

(2) the signs and symptoms of Alzheimer's disease, and

(3) the treatment and care of residents with Alzheimer's disease.

The original KAT was pretested using parallel forms with 20 nursing home staff and yielded a reliability coefficient of .80. Because high scores were consistently obtained, it appeared that the instrument did not discriminate levels of knowledge, therefore, the instrument was revised to include 33 items.

The Staff Perceptions of Caregiving Roles Test (SPCR) is a 78 item self-report instrument developed to measure staff perceptions of family and staff caregiving roles as sources of stress. Many of the items are analogous to items in the Family Perceptions of Caregiving Role (FPCR) instrument, which is used to measure multiple dimensions of family member stress associated with an institutionalized relative with Alzheimer's disease. Various aspects of caregiver role and caregiver burden are assessed as well as interactions and negotiations with family members.

The SPCR was developed by Maas and Buckwalter. Some items were adapted from The Burden Inventory (Zarit, Orr, & Zarit, 1985) and the Hassle's Scale (Kinney & Stephen, 1989). Specific items measure staff perceptions of outsider/insider, primary/secondary, control/no control, conflict/no conflict, and interactions/negotiations aspects of the family caregiver's role. For staff caregiving roles, specific items measure embarrassment, guilt, anxiety/depression, anger/resentment, role inadequacy, frustration, and hassles as sources of burden and stress.

The Attitudes About Family Checklist (AFC) is a 20 item self-report instrument used to assess staff attitudes about family members of residents with Alzheimer's disease, including family visitation, family requests regarding care of their relative, and family participation in the care of their relative. Staff rate the items on a seven point Likert scale (1=strongly disagree; 7=strongly agree). A high score indicates that the staff caregiver has a positive attitude towards

(1) regular visitation from family members,

(2) requests concerning care of the resident with Alzheimer's disease, and

(3) family participation in caring for their relative.

Maas and Buckwalter developed the AFC based on the critical incidences of responses from staff to the statements:

"Describe an interaction or circumstance of your work during the past month that involved the family of a resident with Alzheimer's disease. Briefly write how you felt about the interaction or circumstance and how it affected your ability to do your job."

Family Instruments
The 48-item Family Perceptions of Care Tool (FPT) is used to measure family members' perceptions of care in the following areas:

(1) satisfaction with the resident care environment,

(2) satisfaction with physical care received by the resident,

(3) satisfaction with staff relationships with family members and resident, and

(4) satisfaction with overall care.

Items are rated on a seven-point Likert scale (highest satisfaction=7, lowest satisfaction=1).

The initial version of the FPTC contained 36 items and was called the Family Perception Tool (FPT). It was developed by Maas and Buckwalter in the absences of standardized measures for this purpose. This version measured satisfaction with care of the resident, appropriateness of the patient unit environment, staff knowledge regarding care of Alzheimer's residents, quality of staff relationship with family members, quality of staff relationships with the residents, family member's relationship with the resident, and family members' feelings about institutionalization of the resident with Alzheimer's disease. Pretesting indicated a ceiling effect occurring with consistently high satisfaction scores being given and little variation in scores appearing. Therefore the instrument was increased to 48 items and open-ended questions were added requesting other comments or concerns the family members' might have.

Twenty percent of family members wrote about specific concerns including relationships with staff, feeling left out of their relative's care, concerns about proper care, and concern that the resident did not have enough social and recreational diversions.

The Family Perceptions of Caregiving Role (FPCR) is an 81 item self-report tool developed to measure multiple dimensions of family member stress associated with an institutionalized relative with Alzheimer's disease. The content of the instrument was derived from the theoretical framework of the Person Environment Fit and Interaction. Separate dimensions of the instrument measure:

(1) Stress from the caregiver role, with items concerned specifically with perceptions of the role as defined by the dimensions of outsider-insider, primary-secondary, control-no control, conflict-no conflict, and the quality of interactions with staff,

(2) Burden of the caregiver role, including items concerned specifically with burden from embarrassment, guilt, anger/resentment, anxiety/depression, and hassles, and

(3) Loss resulting from the caregiver role, including items concerned specifically with loss through grief/sorrow and loss through role deprivation/captivity.

The FPCR was developed by Maas and Buckwalter. Some items were adapted from the Burden Inventory (Zarit, Orr, & Zarit, 1985) and the Hassle's Scale (Kinney & Stephen, 1989). Items concerning grief, role deprivation, and role captivity were adapted from measures developed by Perlin, Mullan, Semple, and Skaff (1990).

The Family/Friend Perceptions Interview (FPI) is a semi-structured interview guide, and is drawn from the Family Perceptions of Care Tool (FPCT) and the Family Perceptions of Caregiving Role (FPCR). Both of these instruments have been psychometrically evaluated and provide the conceptual basis for the FPI. Additional questions related to family member or friend caregivers perceptions of the intervention being tested are included. A videotape has been developed for interview training and retraining of interviewers.

The Family Knowledge of Alzheimer's Test (FKAT) is a 22 item instrument used to assess family knowledge regarding Alzheimer's disease. The format for each item is true/false. The FKAT was derived from the 33 item Knowledge of Alzheimer's Test (KAT). The KAT was administered to individual staff of the nursing home and was divided into three subscales to determine the individual level of knowledge possessed regarding: (1) the etiologic pathology of Alzheimer's disease, (2) the signs and symptoms of Alzheimer's disease, and (3) the treatment and care of residents with Alzheimer's disease. The original KAT contained 20 items and was developed at the Dementia Clinic, Department of Neurology, The University of Iowa Hospitals and Clinics. It was pretested using parallel forms with 20 nursing home staff and yielded a reliability coefficient of .80. Because high scores were consistently obtained, it appeared that the instrument did not discriminate levels of knowledge, therefore, the instrument was revised to include 33 items.

Resident Instruments
The Global Deterioration Scale (GDS) is used to determine inclusion criteria for residents with Alzheimer's disease in the study. The GDS was developed by Reisberg and colleagues (1982). It is divided into seven categories corresponding to distinct, clinically identifiable stages of the disease process. One total score is obtained from the instrument.

The Alzheimer's Disease Assessment Scale (ADAS) is an assessment instrument, developed by Mohs and his colleagues (see Rosen, W. G., Mohs, R. C., & Davis, K. L., 1984), which was designed to measure various facets of cognitive and noncognitive abilities in people with Alzheimer's disease. There are several cognitive subscales:

(1) language, including spoken language ability, comprehension, remembering test instructions, and word-finding difficulty in spontaneous speech,

(2) ability to carry out simple commands,

(3) naming objects and fingers,

(4) ability to copy four geometric forms,

(5) ability to execute an overlearned behavior,

(6) orientation to person, place, and time,

(7) recognizing words, and

(8) recalling words.

Noncognitive behaviors include:

(1) Frequency of becoming tearful,

(2) level of depression,

(3) concentration/distractibility level,

(4) cooperation during testing,

(5) extent and conviction of delusional ideation,

(6) extent of pacing,

(7) extent of increased motor activity (fidgeting),

(8) presence of tremors,

(9) extent and conviction of visual, auditory, or tactile hallucinations, and

(10) appetite.

References
Reisberg, B., Ferris, S. H., DeLeon, M. J., & Crook, T. (1982). The Global Deterioration Scale for Assessment of Primary Degenerative Dementia. American Journal of Psychiatry, 139(9), 1136-1139.
Rosen, W. G., Mohs, R. C., & Davis, K. L. (1984). A new rating scale for Alzheimer's disease. American Journal of Psychiatry, 141(11), 1356-1364.
The Functional Abilities Checklist (FAC) is a 28 item instrument which examines the resident with Alzheimer's disease in relation to grooming, hygiene, toileting, bathing, eating, sleeping, exercising, and interacting with others in the environment. The four domains in the FAC are:
(1) self-care ability,
(2) inappropriate behavior,
(3) cognitive status, and
(4) agitated behavior.

The FAC assesses those resident behaviors observed during the previous week and uses a 1 to 4 scale (1=never; 4=multiple times per day) to rate behaviors. A high score indicates a high degree of impairment.

The original FAC was developed by Maas and Buckwalter because other instruments in the literature that were reviewed did not include all of the areas relevant to the functional abilities with persons with Alzheimer's disease. The items in the original version were rated on a 1 to 7 scale with item scores summed to form subscale and total scale scores. It had six subscales: self-care activities, inappropriate behavior, cognitive status, mobility status, communication behaviors, and emotional status. A high score indicated a high degree of impairment.

It was revised to five subscales because the Cronbach's alpha coefficients of the FAC total and subscales were not stable across the baseline and posttest time intervals. These five subscales were self-care abilities, inappropriate behaviors, cognitive status, agitation, and sexual behavior. The sexual behavior subscale was eliminated because of the instability of alpha coefficients.