A Media-Based Approach to Planning Care for Family Elders

A Media-Based Approach to Planning Care for Family Elders A Small Business Innovation Research Grant from the National Institute on Aging Grant #2 R44 AG12883-02 to Northwest Media, Inc. 326 West 12 th Avenue Eugene, OR 97401 Sheri L. Hartman, L.C.S.W. Principal Investigators Project Period: 03/01/1998 02/28/2002 Phase II Final Report This report is an unpublished manuscript submitted in partial fulfillment of requirements for closing out the above project. 2002 Suggested Reference: Hartman, S. L. & Pacifici, C. (2002). A media-based approach to planning care for family elders (Phase II). Retrieved from Northwest Media, Inc. website: http://northwestmedia.com/research/aging-ii.pdf

Sheri L. Hartman, L.C.S.W., Elders A Media-Based Approach to Planning Care for Family A. General Scientific and Technological Aims The overall goal of this project was to develop and evaluate an interactive multimedia program designed to assist seniors, their families, and professionals with planning and providing elder care. In Phase I, two one-half hour broadcast-quality television/video programs were produced that served as an introduction to the series. The programs addressed initial care planning concerns and family decision-making skills. The programs modeled successful solutions to caregiving issues through the use of realistic and positive portrayals of families. In Phase II, the materials and format were expanded to enable elders and their families to apply decision-making skills to four topics related to aging: Χ Emotional/psychological issues, Χ Issues related to changes in living situation, Χ Physical health challenges in the aging process, and Χ Coping with memory loss related to a dementia process. B. Phase II Research Activities Content Development Prior to development of the multimedia materials, two focus groups were conducted, comprised of multiple representatives of several minority groups (Native American, Asian, Hispanic, African American). The first focus group consisted of 10 caregivers who had experience providing care to an elder family member or friend. Caregivers were recruited from support groups sponsored by Senior Alternatives in Oakland, California. A focus group leader read a treatment for the proposed video portions of the curriculum to the group participants. Group members were asked to react to the treatment and to evaluate it on the basis of its relevance and instructional value. The group also discussed whether the treatment reflected appropriate values for individuals in different ethnic groups. Information from the focus group was reviewed by project staff to help determine the final content and format of the video material. The focus group met twice. The meetings were held at the offices of Senior Alternatives and each lasted approximately two hours. A second focus group of another eight caregivers, also recruited from support groups sponsored by Senior Alternatives, met subsequently to review scripts. This group met once for about two hours, also at the offices of Senior Alternatives. Focus group meetings were recorded on audiotape, and a research assistant summarized in writing the comments made in the group discussions. 1

Sheri L. Hartman, L.C.S.W., Elders A Media-Based Approach to Planning Care for Family Feedback from the focus groups was consolidated into four topic areas of program content for the creation of specific multimedia materials. A videotape was produced on each of the four topics: Χ Emotional/psychological issues related to aging, Χ Issues related to changes in living situation, Χ Physical health challenges in the aging process, and Χ Memory loss related to a dementia process. These videotapes ranged in length from 21 minutes to 27 minutes. (The four videotapes are included as Appendix A of this report.) A written workbook was created to accompany each of the videotapes that included corresponding summaries, explications, and activities. (The four workbooks are included as Appendix B of this report.) Project Evaluation Subjects Study participants were recruited from the surrounding San Francisco Bay Area in California, through newspaper ads, advertisements distributed in senior facilities, word of mouth, and Internet postings. Qualifying participants were currently providing care for a senior, but were not caregiving as part of their employment or for pay. An extensive effort was made to recruit research participants from diverse ethnic populations. Procedure Participants were screened by telephone for acceptability into the study and, if eligible, assigned alternately to either the treatment or control group. In the same telephone call an appointment was set for the first of two interviews. At the first interview the research project was briefly described to participants, following a standard script created for this purpose. (The Screening Interview Form and Script are included in this report as Appendix C.) Subjects then reviewed and signed the consent form, after which they completed the study=s baseline questionnaires relating to caregiver depression, strain, and burden, as well as a brief background information questionnaire, which are described below. At the conclusion of the first interview, the media materials on aging were given to each participant according to group assignment, and a second appointment was scheduled for two weeks later. Treatment group subjects were provided the four videotapes and the accompanying written workbooks. Control group subjects were provided only the written workbooks. All subjects were given the materials at the end of their first interview and instructed to review the information over the next two weeks, prior to the second scheduled interview. At the second interview, subjects again completed the study=s three main questionnaires. They were also encouraged to ask any questions that may have come up 2

Sheri L. Hartman, L.C.S.W., Elders A Media-Based Approach to Planning Care for Family for them in the process of their participation, as well as to give feedback on the relevance and quality of the materials they had reviewed. Subjects were again assured of the confidentiality of their responses, and they were provided access to debriefing upon completion of their participation. Following the second interview, control group subjects were given copies of the four videotapes. Subjects in both groups were permitted to keep all of the study materials they had received. In addition, each participant was paid $100 at the completion of his or her involvement in the study. Measures The following three instruments were used to measure the effects of two contrasting approaches to providing information (written only versus written plus video) on caregiver depression, strain, and burden, respectively. (A copy of each measure is included in Appendix D of this report.) Zung Self-Rating Depression Scale. This instrument (Zung, 1965) is a self-report measure comprised of 20 statements selected to identify affective, biological, and psychological aspects of depression. Self-endorsements for each item are rated on a Likert-type scale which ranges from 1 (less depressed) to 4 (more depressed). Total scores are tabulated and recorded for each participant, and these scores are then reported as a percentage of 80, which is the highest score obtainable. Higher scores on the scale indicate higher levels of depression. Caregiver Strain Index. This instrument (Robinson, 1983) is comprised of 12 items that measure caregiver stress on a 4-point Likert-type scale. Areas include inconvenience, confinement, competing demands on time, emotional adjustment, upsetting behavior, work adjustments, sleep disturbance, physical and financial strain, and others. Statistical analysis of the Caregiver Strain Index indicates an internal consistency (Cronbach=s alpha) of.86. Construct validity is reported as quite good relative to caregiver emotional status, subjective perception of caregiver=s roles, and seniors= perceptions of their health status. Higher scores on this index indicate higher levels of caregiver strain. Caregiver Burden Interview. This is a 12-item self-report measure (Zarit, Orr, & Zarit, 1985), with items that describe possible areas of Aburden@ in providing care for a senior, e.g., loss of privacy, restriction on socialization, and senior dependency. Caregivers rate each item on a Likert-type scale, ranging from 1 to 4. The total raw score indicates level of perceived burden, with higher scores indicating higher levels of perceived burden. Background Information. This brief instrument was developed by project staff and included the following items: subject=s age, gender, ethnicity, hours per week spent caregiving, number of seniors for whom providing care, level of education, and family income; senior=s age, gender, ethnicity, and relationship to caregiver; and distance from caregiver=s to senior=s home. Hypotheses 3

Sheri L. Hartman, L.C.S.W., Elders A Media-Based Approach to Planning Care for Family This project aimed to demonstrate that multimedia-based information would have a beneficial effect on reducing senior caregiver depression, strain, and burden. Specific hypotheses were as follows: 1. When compared to the effects of reviewing written materials alone, review of multimedia materials (videotape and written) over a 2-week period would result in a significant reduction in measured level of depression for senior caregivers. 2. When compared to the effect of reviewing written materials alone, review of multimedia materials (videotape and written) over a 2-week period would result in a significant reduction in measured level of burden for senior caregivers. 3. When compared to the effect of reviewing written materials alone, review of multimedia materials (videotape and written) over a 2-week period would result in a significant reduction in measured level of strain for senior caregivers. Results The final study sample was composed of the 31 eligible caregivers who completed both the pre-intervention and post-intervention assessments. Of the 31, 16 were assigned to the treatment group and 15 to the control group. As expected, the sample was predominantly female (about 81%), with the treatment group being about 69% female and the control group about 93% female. Ethnically, 67% of the overall sample identified themselves as Caucasian (about 73% of the treatment group and 60% of the control group). Thirty percent of the entire sample identified themselves as African American (20% of the treatment group and 40% of the control group). The sample=s only Latino subject was in the treatment group. The first step in the hypothesis testing was to conduct some preliminary statistical analysis of the pre- and post-intervention data. Mean scores were calculated for the overall sample, as well as for the treatment and control groups separately, on the pre- and posttest measures of caregiver depression, strain, and burden. Results are reported in Table 1. 4

Sheri L. Hartman, L.C.S.W., A Media-Based Approach to Planning Care for Family Elders Table 1 Mean Scores on the Pre- and Posttest Measures of Caregiver Depression, Strain, and Burden Pretest Posttest Overall Treatment Control Overall Treatment Control Sample Group Group Sample Group Group Measure/Scale (N=31) (n=16) (n=15) (N=31) (n=16) (n=15) Caregiver Depression 39.9 39.3 40.5 39.8 38.9 40.7 Caregiver Strain 26.5 25.0 28.0 26.3 25.1 27.6 Caregiver Burden 25.0 24.3 25.7 25.2 24.8 25.5 Visual inspection of the means reported in Table 1 reveals that there was little or no meaningful difference between the pre- and posttest measures of caregiver depression, strain, or burden, whether in the overall sample, the treatment group, or the control group. Pre- and posttest means were so similar that further statistical analysis of the data did not seem warranted. Based on these results, we concluded that none of the study=s three hypotheses was supported. That is, reviewing both the videotaped and written materials on issues related to the aging process appeared to be no more effective than reviewing the written materials alone in reducing the levels of depression, strain, or burden among caregivers of seniors. Discussion Although the data did not support the study=s hypotheses, anecdotal comments from many subjects reflected their interest in and positive response to the materials they had been given. Subjects also indicated that they had acquired new information from the materials. Following are some possible explanations for the apparent absence of significant change in caregiver depression, strain, or burden. Perhaps the most obvious explanation for the lack of reduction in burden, strain, or depression measures is that the materials did not make the subjects actually feel any better, whether or not the information presented was helpful. Emotional issues certainly relate to presence or absence of information at some level, but the complexities of how one Afeels@ go well beyond simply having information to help one cope with the challenges of caregiving. A second explanation for the failure to find support for the study=s hypotheses is that the period of time between the pre- and postintervention assessments (two weeks) was inadequate for measurable changes to occur and be reflected on the checklists used. 5

Sheri L. Hartman, L.C.S.W., A Media-Based Approach to Planning Care for Family Elders A third possible explanation for the study=s findings is that review of the materials may have actually heightened the caregivers= awareness of emotional issues or insight into their own feelings related to the senior for whom they were providing care. Participation in the study may have contributed to an uncovering of, or breaking down of, denial or lack of insight as to the difficulties and stresses attached to caregiving. In fact, many subjects demonstrated increases in measured level of one or more of the three measures between the pretest and posttest. There was also some anecdotal support for this explanation. For example, one caregiver, after completing the Depression Inventory, commented, AWow...after filling this out, I can see I am really depressed...i had no idea!@ Another commented, AThese questions really focus you on matters that I never really thought of...@ A fourth possibility is that our results may have reflected a lack of sensitivity of the selected instruments in measuring change in feeling over such a brief period of time. Finally, it is possible that the materials we developed would be more effective at reducing strain, burden, and depression among caregivers who are relatively new to the caregiving role than among those with more experience. Some anecdotal support for this possibility was provided by comments from subjects such as the following: AThis information is great, but it would have been helpful to have it sooner rather than now,@ and AThis would have been nice to have before my father got sick.@ However, since we did not ask subjects Ahow long@ they had been providing care for a senior, we cannot say whether the lack of support for the study=s hypotheses was due to the sample being relatively experienced at caregiving. If they were, then perhaps the information provided in the materials was not timely enough to make a measurable difference in the overall stress associated with caregiving. Although we were somewhat disappointed by the results of the study, we believe the materials produced are excellent and of potentially great benefit to many who are planning to or already do provide care for seniors. Judging by the sales of these products, especially through the nationwide Alzheimers Association, people are finding them useful. An additional product, a book manuscript, has been developed out of this project since the completion of the study. Entitled Love Me Tender, the book is based on fifteen interviews with caregivers, focusing on the emotional impact of caring for a dependent elderly person. (The foreword and three sample chapters of the book manuscript are included as Appendix E.) The interviews show that, even though caregiving is difficult and at times heartbreaking, it has its rewards as time passes in a renewed love and understanding between the caregiver and the Acaregiven.@ We are currently seeking a publisher for this book, so that its message of hope can reach some of the millions of actual and potential caregivers in America. 6

APPENDIX A THE FOUR VIDEOTAPES Aging with Grace Coping with Memory Loss Healthy Lifestyles Windows to Change

APPENDIX B THE FOUR WORKBOOKS Aging with Grace Coping with Memory Loss Healthy Lifestyles Windows to Change

APPENDIX C SCREENING INTERVIEW FORM AND SCRIPT

APPENDIX D MEASURES

APPENDIX E FOREWORD AND THREE SAMPLE CHAPTERS OF BOOK MANUSCRIPT Love Me Tender