Abstract

A growing number of studies suggest that improving the self-efficacy of elderly care receivers is a critical challenge for intervention programs. However, we found no instruments that measure elderly care receivers' self-efficacy with respect to the diverse key areas of competence required for them to be strong partners in the care process. In the current study, we developed the Care-Receiver Efficacy Scale (CRES) in response to a need for assessment of self-efficacy of older adults who are faced with the necessity of care from personal caregivers, and as a tool to assist in the measurement of empowerment-oriented and strengths interventions that are designed to increase self-efficacy in older care receivers. Our purposes in this study were to (a) describe the development process of the CRES, designed to measure perceptions of self-efficacy with respect to care receiving in late life, and (b) explore the reliability and validity of this newly developed scale.

As some researchers have noted, the concept of self-efficacy has been applied to the caregiving of elderly persons (Gignac & Gottlieb, 1996; Steffen, McKibbin, Zeiss, Gallagher-Thompson, & Bandura, 2002). Steffen and colleagues noted that work done with respect to caregiving and self-efficacy “suggests that self-efficacy theory holds significant promise for explaining the variability in family members' ability to cope with the chronic demands and challenges of caregiving” (p. 74). Attempts to measure caregiving self-efficacy and consequently to measure effects of interventions have led to the development of scales that facilitate this effort (Steffen et al.; Zeiss, Gallagher-Thompson, Lovett, Tose, & McKibbin, 1999).

Methods

The initial work on care-receiver efficacy that we used to develop the CRES included a number of studies eliciting the perspectives of care receivers (Cox, 2003; Cox & Dooley, 1996; Cox, Dooley, Liston, & Miller, 1998). We conducted in-depth interviews with more than 450 functionally disabled elderly persons, including Euro-English, African American, Mexican American, Native American, and Asian care receivers. The care receivers we selected for inclusion were individuals older than 55 years of age who required at least 6 to 8 hours of personal care per week to accomplish the activities of daily living. All individuals had more than the minimum requirement of care hours.

Elderly participants in these qualitative studies described their roles as care receivers; they also explained the challenges they faced and their ways of coping. The studies suggest that the majority of these cognitively competent care receivers struggled for ways to provide self-care and maintain control over the care process. Achieving a sense of self-efficacy with increased disability is a key challenge (Cox & Dooley, 1996; Cox et al., 1998).

We derived seven themes or components of the care-receiver role from these studies. These components of the care-receiver role included self-care strategies; ways of assisting caregivers; relationship to professional caregivers; use of health and social services; participation in social support networks; ways of coping with feelings and values about increasing dependency; and ways of maintaining or developing meaningful life pursuits. We used these findings to create the dimensions and the related item pools for this study. We then developed a scale to measure individual care-receivers' perceptions of self-efficacy, the CRES, in four multistep phases as listed in Table 1. We followed the recommendations of Benson and Clark (1982) and DeVellis (2003) in our scale development.

Phase 1: Planning

Our first phase was directed toward determining the purpose, scope, and potential audience for the scale. We conducted a review of the literature, discussions with care receivers, and interviews of care receivers as already described here. In many cases, we took items directly from statements of care receivers. For ease of response, we decided to use a Likert format. The intended audience was cognitively able care receivers.

The first author (E. Cox), together with colleagues in gerontology, created an item pool from the identified components of care receiving. We grouped items for presentation purposes into the categories listed herein. All of the components of care-receiver self-efficacy were represented by the pool of items; however, we made no attempt to create an equal number of items for each component. We did not theoretically derive these categories; we created them from an extensive review of the literature and a thematic analysis of qualitative interview data. We did not intend them to reflect the final structure of a measure. Whereas we anticipated that the final measure would be multifaceted, we later assessed the empirical structure by using exploratory factor analysis. The initial item pool comprised 123 items, approximately three times as many items as we desired for the final measure as recommended by DeVellis (2003).

Phase 2: Item Pool Creation

Expert Review for Content Validation

We asked four experts in gerontological social work to review all items and comment on item clarity and appropriateness as well as how well the item reflected the construct of care-receiver self-efficacy. In order to provide a rough estimate of item location on a trait continuum, we also asked these experts to classify each item as easy, moderate, or difficult to agree with.

Two of the experts were assistant professors of social work, with extensive prior careers as gerontological social workers. Two of the four experts have authored books, book chapters, and journal articles on health care, abuse, empowerment, and caregiving for elderly persons, in addition to other issues associated with aging. One expert spent more than a decade as an analyst for the U.S. Senate Special Committee on Aging; another was state ombudsman for elderly persons for more than 25 years and is a nationally recognized advocate for the rights of older disabled residents of nursing homes and assisted care facilities. All four of the experts have a strong interest in the empowerment of frail elders.

We asked experts to (a) evaluate whether the items related to perceptions of care-receiving efficacy; (b) judge item quality and make suggestions for item revision; (c) judge social desirability of item response and make suggestions for rewording; and (d) identify and comment on the relationships among components—that is, whether single or multiple subscales were represented by the items and what they might be titled. We sent forms by means of postal mail to the four experts in 2003–2004. We made follow-up telephone calls after 3 weeks to anyone who had not yet completed the review.

Results

Experts commented that subscales, as they identified them, were likely to be highly related and that items would likely relate to more than one subscale. Reviewers did not agree with the division of items into the proposed list of seven categories, but they did agree that multiple facets of care receiving were represented by the items. The idea of a multifaceted measure was supported at this phase, although it was not expected that items would factor according to the original category designation.

Experts judged 10 items to be confusing as a result of wording or an unclear relationship with care-receiver efficacy (e.g., “I feel guilty because my health care costs so much,” “I refuse help as often as possible even when I need it”). Nineteen more items failed to relate to care-receiver self-efficacy, as judged by two or more of the four experts. We retained items that all or three of the four experts judged as related to care-receiver efficacy. In total, we flagged 29 items, the content of which experts found ineffective, for deletion.

Pilot Testing

A sample of 43 care receivers, referred by gerontological social workers employed in numerous service programs for the aging, responded to the items. Briefly, demographic characteristics reported by the majority of participants were as follows: Health status was either fair or good (about 46% in each category); 72% lived in their own homes; approximately 64% lived with family; 64% were married; and about 91% were Caucasian. The mean age of the participants was 78.40 (SD =10.81, range = 62–97). The 43 care receivers completed the 123 items individually in the presence of a research associate. Items were read aloud if the care receiver wished it. Care receivers were encouraged to respond to all items, although not past the point of fatigue. Completion of the inventory took about 45 to 60 minutes. To access these participants, research associates traveled to independent senior housing, assisted living facilities, and skilled nursing facilities.

Results

We flagged 27 items as having low (<.60) variance or low (<.20) item-total discrimination coefficients. We chose these criteria to result in deletion of an additional 25% of the items. Fifteen of the 27 items had been flagged as poorly functioning by the expert panel as well. After we completed the content validation and pilot testing, 71 workable items remained. As we did not know the extent of the correlation among items at this stage of scale development, we retained a sufficiently large number of items to allow us to make further refinement when examining internal consistency (DeVellis, 2003).

Phase 3: Quantitative Evaluation

Participant Sample

We recruited a total of 177 participants from the Denver, CO metropolitan area as part of a larger intervention study (study description available from E. Cox). Individuals were referred by health, aging, and social service programs; churches and senior social or political groups; and other study participants. To participate in the study, an individual had to (a) be 55 years of age or older (b) require a minimum of 6 hours of personal care per week, and (c) be cognitively able to participate in the intervention program as determined by the Mini-Mental State Exam from the Diagnostic Interview Schedule (Folstein, Folstein, & McHugh, 1975) and the judgment of the clinical social worker who was working with the project. One individual under the age of 55 was selected for participation because of her disability and need for care.

The mean age of participants was 78.42 (SD = 9.78), with ages ranging from 51 to 96. A majority of the participants were female (76.3%), Caucasian (78.5%), and widowed (51.4%). The modal living status was “living alone” (76.3%), with much smaller numbers “living with family” (17.5%) and “living with a nonrelative” (6.2%). The modal residential location was an independent retirement community (40.7%), with 27.1% of the participants in assisted living, 24.9% in their own homes, 5.6% in a relative's home, and 1.7% in a skilled nursing facility. The self-reported health status of participants was mostly fair or good (39.5% in each category), with 13.0% of the participants in poor and 7.3% in excellent health. The modal income category was $4,860–11,064 (42.9%), with income categories ranging from$0–4,860 (6.8%) to over \$45,000 (2.3%).

Instruments

We presented items to participants in booklet form. We administered the Geriatric Depression Scale–Short Form (GDS-SF; Sheikh & Yesavage, 1986) and the Philadelphia Geriatric Center Morale Scale (PGCMS; Lawton, 1975) in order to explore the links between self-efficacy, depression, and morale. We selected the GDS-SF and the PGCMS for a test of convergent validity, because these two instruments are commonly used in studies focused on psychological well-being in geriatric populations (Blazer, 2002). Recent focus on factors related to depression in mentally competent disabled elderly care recipients has established the relationship between depression and morale and mediating factors related to care-receiver efficacy, as identified in the CRES. These factors include social support, a sense of reciprocity, and sense of mastery (Wolff & Agree, 2004; Yuri, Borenstein, Chiriboga, & Mortimer, 2005). We hypothesized that some facets of self-efficacy would be negatively correlated with depression and positively related to morale in elderly care receivers; specifically, the efficacy facet related to increasing dependence would relate to depression and the quality of life facet would relate to morale.

Procedure

During the first contact with project staff, often by telephone, we had participants given a general description of the project, including information on the development of the CRES as well as details about the intervention. At this time, if the individual wished to participate, project staff determined a contact site for his or her interview. This was typically the participant's home, though on occasion the home of relatives, a senior center, health care facility, or other site was used. All participants were interviewed individually for the purpose of completion of the consent form and study instruments (i.e., the CRES, the GDS-SF, and the PGCMS). During the interview, interviewers read all survey items to the participant and recorded his or her answers. Individuals trained in the fields of social work and gerontology conducted the interviews. We employed Spanish- and Russian-speaking social workers to conduct the interviews for participants speaking those languages. We collected data between January 2002 and July 2003.

Results of the Quantitative Analysis

Exploratory Principal Components Analysis

We used the items identified in the principal components analysis to create four factor-based subscales: self-care strategies (Subscale 1), relational coping with caregivers (Subscale 2), perceptions of dependence (Subscale 3), and specific performance-related quality of life (Subscale 4). We formed subscale scores by averaging item raw scores.

Conceptual Review of Subscales

The first author and two gerontology students reviewed the four subscales with respect to fidelity to the initial conceptual content used to generate items. Self-care strategies, relationship to professional caregivers, and use of health and social services were captured in Subscale 1 (self-care strategies). Ways of assisting caregivers were captured in Subscale 2 (relational coping with caregivers); values about increasing dependency were reflected in Subscale 3 (perceptions of dependence), and participation in social networks and maintaining meaningful life pursuits were captured in Subscale 4 (performance-related quality of life). However, we found a deficiency in terms of a conceptual area missing from the content represented by the four subscales: feelings about dependency. We considered this conceptual area to be necessary to a scale that would be useful in interventions with care receivers. Therefore, we identified 10 items that reflected feelings about increased dependency on the basis of item content in the 71 items initially factored. These 10 items had inadequate loadings on the first seven factors, and so we had removed them from consideration in the first iteration of the factor analysis. The ad hoc subscale formed by this item set was viewed as likely to be weak on the basis of empirical structure and also might overlap other subscale content. However, in this case, we gave the conceptual review and experts' support of these items precedence over the exploratory factor analysis that led to the deletion of those 10 items. We labeled the tentative fifth subscale “accepting help.”

Internal Consistency Reliability

We estimated Cronbach's alpha for each of the five subscales (see Table 2). Eight of 56 total items failed to contribute to their intended subscale and were deleted. Reliability of Subscales 3 (perceptions about dependence) and 5 (accepting help) were low compared with that of the other subscales. These scales come close to a minimum standard of.70 for reliability (Nunnally, 1978) and were judged to be of questionable practical use, but we retained them for further analysis and potential future modification. A 48-item measure is still lengthy and may challenge the energy and attention of elderly care receivers. To optimize scale length, we identified the 5 most internally consistent items per subscale by means of repeated item analyses, deleting the least effective items one at a time. Table 2 also lists the reliabilities of each shortened subscale. (Italicized items in Appendix B are the 5 items retained for each subscale.)

Phase 4: Validation

Convergent Validity

We calculated correlations between subscale scores and scores on the GDS-SF and the PGCMS. In addition, we correlated each subscale with all other subscales (see Table 3).

As we expected, perceptions about dependence (Subscale 3) were significantly positively correlated with depression in geriatric care receivers. However, we found the highest correlation (r = −.47) between performance-related quality of life (Subscale 4) and depression. Morale was significantly related to quality of life, but also to perceptions of dependence. Overall, subscale correlations with validation measures were only moderate. We anticipated correlations in the.5–.6 range, but the correlations we found were in the.3–.4 range. However, results conformed to expectations and so provide support for convergent validity of the CRES. Subscales were correlated at a low to moderate level. The ad hoc subscale, Subscale 5, did not overlap other subscales to any marked extent.

Validation by Means of Correlation With Experts' Ratings

We obtained item difficulty or item location ratings from (a) the four experts, described in Phase 2, and (b) the field administration of the measure, described in Phase 3. We calculated empirical item locations by using Winsteps (Linacre, 2005) in a Rasch model analysis. Item location values are nonlinear transformations of item raw scores that are on an interval scale. We used Spearman's rho to correlate empirical item locations with the average (mean) judged item locations by subscale.

Correlations were moderate to high for three subscales, although they were statistically significant at p <.05 for only two subscales (Table 4). This suggests that, for three subscales, experts understood the items in a manner similar to care receivers and thus supports the validity of subscales by means of this mutual agreement. For Subscales 1 and 2, mean experts' ratings were unrelated to empirical item locations. For these two subscales, experts were in substantial disagreement about item location ratings and empirical item means did not vary greatly.

Scale Use

The response scale had 5 points, with a neutral midpoint. All options were well used except the midpoint. The pattern of response scale use was similar for all five subscales. A 4-point scale could be used effectively in the future to capture responses.

Summary

Internal consistency reliability estimates supported the utility of the subscales, with the possible exception of the shortest subscale, perceptions of dependence. The internal consistency reliability estimate for Subscale 5, accepting help, was also lower than desired, barely exceeding the minimum.70 standard. We did find support for convergent validity, with stronger support for content validity from experts' judgments. The 5-point response scale could be replaced with a 4-point scale, and the construct coverage could be expanded by the inclusion of items that are written to be more difficult to agree with, thus yielding more variability in item means. Finally, empirical item location agreed to a considerable extent with expert-judged item location, providing support for the construct validity of three of the five subscales.

Discussion

From a social policy, financial, and humanitarian perspective, the capacity of cognitively able care receivers to organize and manage their own care should be maximized. Our purpose in the study reported here was to develop a measure of care-receiver self-efficacy that was currently lacking in the literature. The resultant CRES is intended for use with psychoeducational interventions aimed at increasing the capacity of lucid care receivers to direct and improve their own care.

The CRES generally showed adequate internal consistency reliability. We found support for validity through low to moderate correlations with the GDS-SF and the PGCMS, correlations with experts' ratings of item difficulty, and expert review of item content. Several limitations and suggestions for further use should be noted. First, reliability estimates of two of the five subscales were lower than desired. Second, the breadth of coverage of the items was less than desired. Third, expert and empirical item ordering were unrelated for Subscales 1 and 2, possibly as a result of restricted breadth of coverage. Fourth, correlations with validation measures were modest and involved only two external measures (the GDS-SF and PGCMS). Fifth, we used three sources of validity evidence, but there are many more that remain to be explored. Goodwin and Leech (2003) recommend that measure validity be supported by multiple sources of evidence. We did not include evidence sources such as examination of response processes, discriminant validity, group-comparison studies, and criterion-related validity studies in this project, as they would have exceeded the study scope and resources. Future research should address the regression of caregiver stress and satisfaction with caregiving on CRES subscales.

In future scale revisions, researchers could address limitations by revising or adding items to extend scale coverage and length. In future revisions they might also address the improvement of item wording by simplification and clarification, such as by the use of less complex words. Relationships with additional validation measures such as locus of control and a coping inventory would be of interest. Future study of discriminant and criterion-related validity would also be appropriate, as would a reexamination of the factor structure by means of confirmatory factor analysis, particularly in light of the inclusion of an ad hoc subscale in the measure.

Despite challenges with respect to reliability regarding Subscale 3 and both reliability and structure regarding Subscale 5, neither was deleted at this point, because of the critical significance of beliefs and attitudes about needing and accepting care to successfully meeting the demands of the care-receiving role. Although strong with respect to representing stated feelings about care receiving among elderly respondents in a series of qualitative studies across culturally diverse populations of elderly persons (Cox & Dooley, 1996), the items in Subscale 3 do not assist in assessing change in perspective or willingness to overcome these beliefs in order to be effective as care receivers. Items in Subscale 5 are more indicative of ways some elderly care receivers have rationalized their need for care in a manner that makes acceptance of assistance less difficult. It is evident that more research has to be done with regard to creating items that capture both attitudes toward acceptance of assistance and the changes necessary to allow for proactive involvement in the care-receiving role.

More than 78% of the sample participants were Caucasian and 76% were female; in combination, over 55% of the participants were female Caucasian care receivers. As a result of this disproportionate number of female and Caucasian participants, the generalizability of the findings in this study has to be assessed with male care receivers, as well as groups of care receivers having diverse racial and ethnic backgrounds.

Furthermore, self-efficacy might be a contextually dependent concept. Thus, all subscales of the CRES may not be equally applicable in all settings. Instead of applying all CRES subscales, researchers, program evaluators, and practitioners may need to choose the most relevant subscales of the CRES, depending on practice setting, client population, intervention objectives, and policy purpose.

The continued development and use of the CRES can be an important step in encouraging researchers to pay attention to the complexity of the care-receiving role, the critical importance that care receivers play in their care process, and the potential for persons to develop competencies as care receivers. Gaining a sense of self-efficacy as it relates to the care-receiver role is critical to both care receivers and caregivers as they struggle to forge effective partnerships.

1

Graduate School of Social Work, University of Denver, CO.

2

College of Education, University of Denver, CO.

3

Faculty of Languages and Cultures, University of Kyushu, Fukuoka, Japan.

4

Children's Medical Center, University of Texas at Arlington.

Decision Editor: Linda S. Noelker, PhD

Table 1.

Scale Development Procedure.

Development Phase Scale Development Steps
Planning Determine the measure purpose
Identify the projected audience as cognitively able elderly care receivers
Conduct review of the literature
Select Likert scale as item format
Construction Generate item pool that has redundant and overinclusive items
Write three times as many items as intend to use
Make expert review of all items for content validation
Reduce item pool to extent dictated by expert panel
Quantitative evaluation Use pilot items and conduct item analysis Reduce item pool to approximately half of original length
Derive subscales by means of exploratory factor analysis
Assess concordance of subscales with original measure purpose and adapt
Evaluate subscale items by means of item analysis
Assess internal consistency reliability of subscales
Assess research participant use of Likert scale
Optimize subscale length
Validation Assess convergent validity
Assess relationship between expert and respondent interpretation of items by means of difficulty ratings
Development Phase Scale Development Steps
Planning Determine the measure purpose
Identify the projected audience as cognitively able elderly care receivers
Conduct review of the literature
Select Likert scale as item format
Construction Generate item pool that has redundant and overinclusive items
Write three times as many items as intend to use
Make expert review of all items for content validation
Reduce item pool to extent dictated by expert panel
Quantitative evaluation Use pilot items and conduct item analysis Reduce item pool to approximately half of original length
Derive subscales by means of exploratory factor analysis
Assess concordance of subscales with original measure purpose and adapt
Evaluate subscale items by means of item analysis
Assess internal consistency reliability of subscales
Assess research participant use of Likert scale
Optimize subscale length
Validation Assess convergent validity
Assess relationship between expert and respondent interpretation of items by means of difficulty ratings
Table 2.

Cronbach's Alpha Estimates for Factor-Based Subscales.

α

Subscale n Full Scale 5-Item Scale
1: Self-care strategies (15 items) 125 0.91 0.82
2: Relational coping w/caregivers (10 items) 166 0.82 0.82
3: Perceptions of dependence (5 items) 133 0.69 0.69
4: Performance-related quality of life (10 items) 162 0.86 0.80
5: Accepting help (8 items) 130 0.71 0.67
α

Subscale n Full Scale 5-Item Scale
1: Self-care strategies (15 items) 125 0.91 0.82
2: Relational coping w/caregivers (10 items) 166 0.82 0.82
3: Perceptions of dependence (5 items) 133 0.69 0.69
4: Performance-related quality of life (10 items) 162 0.86 0.80
5: Accepting help (8 items) 130 0.71 0.67

Note: Sample size varies because some of the item data are missing.

Table 3.

Intercorrelations of Observed Variables.

Scale 10
1. Subscale 1 —
2. Subscale 2 .40** —
3. Subscale 3 .11 07 —
4. Subscale 4 .59** .39** −.04 —
5. Subscale 5 .28** .26** −.15 .23** —
6. GDS-SF −.27** −.11 .34** −.47** −.19* —
7. PGCMS .18* .14 −.33** .38** .10 −.77** —
8. PGCMS–Subscale 1 .10 −.02 .26** .21** .06 −.63** .85** —
9. PGCMS–Subscale 2 .24** .20* −.25** .35** .14 −.59** .74** .40** —
10. PGCMS–Subscale 3 .17* .17* −.29** .39** .10 −.69** .87** .65** .48** —
Scale 10
1. Subscale 1 —
2. Subscale 2 .40** —
3. Subscale 3 .11 07 —
4. Subscale 4 .59** .39** −.04 —
5. Subscale 5 .28** .26** −.15 .23** —
6. GDS-SF −.27** −.11 .34** −.47** −.19* —
7. PGCMS .18* .14 −.33** .38** .10 −.77** —
8. PGCMS–Subscale 1 .10 −.02 .26** .21** .06 −.63** .85** —
9. PGCMS–Subscale 2 .24** .20* −.25** .35** .14 −.59** .74** .40** —
10. PGCMS–Subscale 3 .17* .17* −.29** .39** .10 −.69** .87** .65** .48** —

Notes: N = 177. GDS-SF = Geriatric Depression Scale–Short Form: PGCMS = Philadelphia Geriatric Center Morale Scale.

*p <.05; **p <.01.

Table 4.

Correlations Between Judges' Item Difficulty Ratings and Empirical Item Difficulties.

Subscale ρ p
1: Self-care performances −.08 .790
2: Relational coping with caregivers .15 .680
3: Perceptions of dependence .87 .060
4: Performance-related qualify of life .74 .020
5: Accepting help .79 .020
Subscale ρ p
1: Self-care performances −.08 .790
2: Relational coping with caregivers .15 .680
3: Perceptions of dependence .87 .060
4: Performance-related qualify of life .74 .020
5: Accepting help .79 .020
Appendix

AStructure and Pattern Coefficients From 49-Item Principal Components Analysis.

Component

Item
I believe that I have good skills with respect to guiding my care situation. .743/.669   .471/.224
I am very involved in any planning that is initiated on my behalf. .736/.767   .243/−
I have learned about the specialized knowledge and skills that professionals have. .702/.740   .210/−
I find out as much as possible about the medical conditions that I have. .695/.622   .464/.254
I am able to ask professional caregivers about anything I don't understand. .691/.704
I believe that the things I do to improve my health can be effective. .666/.640 .344/.218 .231/− .203/−
I have learned about the knowledge and skills that various health professionals have and can offer to my situation. .652/.679 .214/−
Using health and social services can help me remain as independent as possible. .621/.596   .315/−
I frequently make care decisions that my professional caregivers agree to follow. .616/.537 .258/−  .361/−
I often give my doctor information about my situation that helps her or him make decisions about my care. .614/.555 .243/−  .319/−
I think of myself as a partner in my own health care. .601/.601   .260/−
I read about the side effects of the drugs that are prescribed for me. .599/.554   .312/−
I have learned new ways of doing things so I don't have to depend on others. .587/.558 .221/− .290/.232 .202/−
I am willing to try new services. .577/.505   .424/.271
I participate actively in decisions about my care. .494/.443   .337/.206
I believe that I am able to make decisions that affect my life, regardless of my disabilities. .489/.429  .247/.210 .281/−
I make every effort to know about my caregiver's needs and problems.  .809/.803 .214/− .203/−
I often tell my caregiver that I love or care about him or her.  .785/.784
My caregiver and I are good friends. .277/− .757/.761
I often provide emotional support for my caregiver.  .738/.712 .279/.210 .206/−
I try to fit my needs into my caregiver's schedule.  .677/.695
I try to find things I can do for my caregiver. −/.224 .566/.554  .296/−
My caregiver asks me for help with the things I can do. .221/− .558/.556 −/.265
I often wait to ask for help from my caregiver until it will be convenient for my caregiver to provide assistance.  .525/.455 .270/.229 .349/.269
My caregiver pays attention when I talk to him or her. .420/.400 .508/.476  −/.204
I find ways to entertain myself so my caregiver won't worry about me. .284/− .484/.402  .325/−
I believe I have some important things to share with other people who have some of the same problems I do.  .445/.372  .436/.347
I find that talking about my illness or disability with others who have similar problems is helpful.  .406/.362  .358/.303
I don't like being dependent on anyone; it's hard.   .800/.786
I hate to ask for help.   .721/.719
I feel very angry about having to be dependent on others.   .632/.660
My greatest fear is being a burden on others.   .542/.524
People tend to think I cannot do things that I can do.   .527/.541
I have always been very independent. .225/−  .518/.500
I feel like my freedom has been taken away.   .432/.431
I am able to contribute to my community. .365/−   .719/.691
I have developed a number of new interests in the past few years. .229/− .211/−  .714/.721
I have made new friends since my health status has changed. .262/   .699/.715
I can still do a number of things that I enjoyed all of my life. .282/− .374/.209 .245/.218 .662/.613
I am still able to find ways to participate in meaningful activities. .472/.273 .206/−  .642/.535
I have a number of friends that enjoy the same activities as I do. .274/− .359/.228  .619/.557
I still enjoy learning new things. .545/.359 .260/−  .616/.465
I try to learn as much about services available to elderly persons as possible. .316/−   .601/.562
I have found new kinds of entertainment that replace things I am unable to do because of physical limitations. .208/−   .589/.590
There are still a number of things I would like to accomplish before I die. .420/.213 .272/−  .574/.469
I value every day of life that I have. .387/.213 .232/−  .543/.443
I have many things to accomplish, almost every day. .413/.224 .322/− .222/− .501/.376
I participate in educational groups or support groups that address the issues related to the medical conditions I have. .230/−   .485/.471
Component

Item
I believe that I have good skills with respect to guiding my care situation. .743/.669   .471/.224
I am very involved in any planning that is initiated on my behalf. .736/.767   .243/−
I have learned about the specialized knowledge and skills that professionals have. .702/.740   .210/−
I find out as much as possible about the medical conditions that I have. .695/.622   .464/.254
I am able to ask professional caregivers about anything I don't understand. .691/.704
I believe that the things I do to improve my health can be effective. .666/.640 .344/.218 .231/− .203/−
I have learned about the knowledge and skills that various health professionals have and can offer to my situation. .652/.679 .214/−
Using health and social services can help me remain as independent as possible. .621/.596   .315/−
I frequently make care decisions that my professional caregivers agree to follow. .616/.537 .258/−  .361/−
I often give my doctor information about my situation that helps her or him make decisions about my care. .614/.555 .243/−  .319/−
I think of myself as a partner in my own health care. .601/.601   .260/−
I read about the side effects of the drugs that are prescribed for me. .599/.554   .312/−
I have learned new ways of doing things so I don't have to depend on others. .587/.558 .221/− .290/.232 .202/−
I am willing to try new services. .577/.505   .424/.271
I participate actively in decisions about my care. .494/.443   .337/.206
I believe that I am able to make decisions that affect my life, regardless of my disabilities. .489/.429  .247/.210 .281/−
I make every effort to know about my caregiver's needs and problems.  .809/.803 .214/− .203/−
I often tell my caregiver that I love or care about him or her.  .785/.784
My caregiver and I are good friends. .277/− .757/.761
I often provide emotional support for my caregiver.  .738/.712 .279/.210 .206/−
I try to fit my needs into my caregiver's schedule.  .677/.695
I try to find things I can do for my caregiver. −/.224 .566/.554  .296/−
My caregiver asks me for help with the things I can do. .221/− .558/.556 −/.265
I often wait to ask for help from my caregiver until it will be convenient for my caregiver to provide assistance.  .525/.455 .270/.229 .349/.269
My caregiver pays attention when I talk to him or her. .420/.400 .508/.476  −/.204
I find ways to entertain myself so my caregiver won't worry about me. .284/− .484/.402  .325/−
I believe I have some important things to share with other people who have some of the same problems I do.  .445/.372  .436/.347
I find that talking about my illness or disability with others who have similar problems is helpful.  .406/.362  .358/.303
I don't like being dependent on anyone; it's hard.   .800/.786
I hate to ask for help.   .721/.719
I feel very angry about having to be dependent on others.   .632/.660
My greatest fear is being a burden on others.   .542/.524
People tend to think I cannot do things that I can do.   .527/.541
I have always been very independent. .225/−  .518/.500
I feel like my freedom has been taken away.   .432/.431
I am able to contribute to my community. .365/−   .719/.691
I have developed a number of new interests in the past few years. .229/− .211/−  .714/.721
I have made new friends since my health status has changed. .262/   .699/.715
I can still do a number of things that I enjoyed all of my life. .282/− .374/.209 .245/.218 .662/.613
I am still able to find ways to participate in meaningful activities. .472/.273 .206/−  .642/.535
I have a number of friends that enjoy the same activities as I do. .274/− .359/.228  .619/.557
I still enjoy learning new things. .545/.359 .260/−  .616/.465
I try to learn as much about services available to elderly persons as possible. .316/−   .601/.562
I have found new kinds of entertainment that replace things I am unable to do because of physical limitations. .208/−   .589/.590
There are still a number of things I would like to accomplish before I die. .420/.213 .272/−  .574/.469
I value every day of life that I have. .387/.213 .232/−  .543/.443
I have many things to accomplish, almost every day. .413/.224 .322/− .222/− .501/.376
I participate in educational groups or support groups that address the issues related to the medical conditions I have. .230/−   .485/.471

Note: Dash marks represent values <.20.

Appendix

BItem Content by Subscale.

Scale 1:Self CarePerformances Scale 2:Relational CopingWith Caregivers Scale 3: Perceptions ofDependence Scale 4:Performance-Related QOL Scale 5:Accepting Help
I am very involved in any planning that is initiated on my behalf. I make every effort to know about my caregiver's needs and problems. I don't like being dependent on anyone; it's hard. I have developed a number of new interests in the past few years. I have found ways to accept the need for assistance and still enjoy life.
I frequently make care decisions that my professional caregivers agree to follow. I often provide emotional support for my caregiver. I feel very angry about having to be dependent on others. I can still do a number of things that I enjoyed all of my life. I just accept the fact that I need help and don't dwell on it.
I have learned about the knowledge and skills that various health professionals have and can offer to my situation. I often tell my caregiver that I love or care about him or her. I hate to ask for help. I am still able to find ways to participate in meaningful activities. I believe that I can handle my feelings about increased dependency well.
I find out as much as possible about the medical conditions that I have. My caregiver and I are good friends. My greatest fear is being a burden on others. I have a number of friends that enjoy the same activities as I do. I have decided to just accept the fact that I need assistance.
I often give my doctor information about my situation that helps her or him make decisions about my care. I try to fit my needs into my caregiver's schedule. I feel like my freedom has been taken away. I am able to contribute to my community. Taking help when I need it is easy.
I have learned about the specialized knowledge and skills that professionals have. My caregiver pays attention when I talk to him or her.  I still enjoy learning new things. The things I did before are important in helping me accept help now.
I read about the side effects of drugs that are prescribed for me. I find ways to entertain myself so my caregiver won't worry about me.  There are still a number of things I would like to accomplish before I die. I am very grateful for assistance.
I believe that I have good skills with respect to guiding my care situation. I often wait to ask for help from my caregiver until it will be convenient for my caregiver to provide assistance.  I value every day of life that I have. You have to focus on the positive and retain your sense of humor when disabilities occur.
I am able to ask professional caregivers about anything I don't understand. I try to find things I can do for my caregiver.  I have made new friends since my health status has changed.
I actively work to learn more about my health problems. My caregiver asks me for help with the things I can do.  I have found new kinds of entertainment that replace things I am unable to do because of physical limitations.
I have learned new ways of doing things so that I don't have to depend on others.
I believe that the things I do to improve my health can be effective.
I think of myself as a partner in my own health care.
I am willing to try new services.
I participate actively in decisions about my care.
Scale 1:Self CarePerformances Scale 2:Relational CopingWith Caregivers Scale 3: Perceptions ofDependence Scale 4:Performance-Related QOL Scale 5:Accepting Help
I am very involved in any planning that is initiated on my behalf. I make every effort to know about my caregiver's needs and problems. I don't like being dependent on anyone; it's hard. I have developed a number of new interests in the past few years. I have found ways to accept the need for assistance and still enjoy life.
I frequently make care decisions that my professional caregivers agree to follow. I often provide emotional support for my caregiver. I feel very angry about having to be dependent on others. I can still do a number of things that I enjoyed all of my life. I just accept the fact that I need help and don't dwell on it.
I have learned about the knowledge and skills that various health professionals have and can offer to my situation. I often tell my caregiver that I love or care about him or her. I hate to ask for help. I am still able to find ways to participate in meaningful activities. I believe that I can handle my feelings about increased dependency well.
I find out as much as possible about the medical conditions that I have. My caregiver and I are good friends. My greatest fear is being a burden on others. I have a number of friends that enjoy the same activities as I do. I have decided to just accept the fact that I need assistance.
I often give my doctor information about my situation that helps her or him make decisions about my care. I try to fit my needs into my caregiver's schedule. I feel like my freedom has been taken away. I am able to contribute to my community. Taking help when I need it is easy.
I have learned about the specialized knowledge and skills that professionals have. My caregiver pays attention when I talk to him or her.  I still enjoy learning new things. The things I did before are important in helping me accept help now.
I read about the side effects of drugs that are prescribed for me. I find ways to entertain myself so my caregiver won't worry about me.  There are still a number of things I would like to accomplish before I die. I am very grateful for assistance.
I believe that I have good skills with respect to guiding my care situation. I often wait to ask for help from my caregiver until it will be convenient for my caregiver to provide assistance.  I value every day of life that I have. You have to focus on the positive and retain your sense of humor when disabilities occur.
I am able to ask professional caregivers about anything I don't understand. I try to find things I can do for my caregiver.  I have made new friends since my health status has changed.
I actively work to learn more about my health problems. My caregiver asks me for help with the things I can do.  I have found new kinds of entertainment that replace things I am unable to do because of physical limitations.
I have learned new ways of doing things so that I don't have to depend on others.
I believe that the things I do to improve my health can be effective.
I think of myself as a partner in my own health care.
I am willing to try new services.
I participate actively in decisions about my care.

Notes: Italicized items form the 5-item short form scales. QOL = quality of life.

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