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Correspondence: 2 Address correspondence to Ronald W. Toseland, PhD, Institute of Gerontology, School of Social Welfare, RI 217, University at Albany, State University of New York, 135 Western Avenue, Albany, NY 12222. E-mail: toseland{at}albany.edu
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Key Words: Caregiving • Telephone • Intervention • Support group • Health education
Although telephone groups have not been widely used or evaluated, reviews of the existing literature are very positive about their effectiveness (Colon, 1996; Schopler, Abell, & Galinsky, 1998; Schopler, Galinsky, & Abell, 1997). A recent review of 19 studies of TSG found that the groups included individuals with many different types of chronic health problems and their family caregivers (Toseland & Rivas, 2005). Although the review concluded that there were relatively few controlled studies and that more well-controlled studies were needed, the results of the existing studies "were overwhelming positive" (Toseland & Rivas, p. 182).
The literature describes many advantages of TSG over traditional in-person support-group models (for reviews, see McKenna & Green, 2002; Schopler et al., 1997; Smokowski, Galinsky, & Harlow, 2001). TSG can provide access to hard-to-reach caregivers, such as those who live in rural areas. The use of teleconferencing enables caregivers from dispersed geographical locations to interact and form support networks (Kaslyn, 1999). This is an especial advantage when the prevalence of a particular chronic illness is relatively low and it would be difficult to recruit enough individuals to form an in-person group in a limited geographic area. Telephone groups can also provide access to people who are homebound because of their own disabilities or because of the needs of the person for whom they are caring. TSG also provides access to individuals who do not have public or private transportation to attend in-person meetings.
Telephone groups are especially appealing to caregivers who are shy or uncomfortable when engaging in in-person group interactions (Galinsky, Schopler, & Abell, 1997; Glueckauf & Loomis, 2003; Martindale-Adams, Nichols, Burns, & Malone, 2002; Rosswurm, Larrabee, & Zhang, 2002). Because members' identities are masked by the lack of visual cues, and because differences that are not salient to the group are less likely to interfere with interaction, members are more likely to disclose issues that are taboo in in-person groups. For these reasons, telephone groups can reduce stigma and increase confidentiality, and they can produce greater levels of self-disclosure, familiarity, and solidarity than in-person groups (Galinsky et al., 1997; McKenna & Green, 2002; Smokowski et al., 2001).
Another advantage of telephone groups is ease of assembly. It takes less time to make a telephone call than to travel to and attend an in-person group meeting. Therefore, scheduling the group and gaining the participation of group members is easier than for in-person groups. Teleconferencing technology also eliminates the costs associated with a meeting room and with transportation.
Notwithstanding the advantages of telephone groups, there are limitations of these groups that can only be overcome with careful planning. For example, because group members cannot see each other, the leader must be sure that everyone can identify each speaker. The leader can accomplish this by suggesting that members mention their names each time before they speak in early group sessions, and that they continue this practice until all members can recognize all voices.
The lack of visual cues can also change the group dynamics. Leaders often take a more active role in telephone groups than in in-person groups because there is a greater need to clarify communications and to structure group-interaction patterns (Lester, 1995; Martindale-Adams et al., 2002; Nokes, Chew, & Altman, 2003). Also, telephone conversations can be more difficult to comprehend than in-person conversations for some caregivers who have hearing difficulties or are easily fatigued (Stein, Rothman, & Nakanishi, 1993; Wiener, Spencer, Davidson, & Fair, 1993). For these and other reasons, TSG meetings are generally of a shorter duration than meetings of in-person groups.
Other considerations when planning telephone groups include the quality of the teleconferencing service that will be used. There can be issues of poor sound quality and a risk of being disconnected during the group session. In this and other ongoing studies of telephone groups, we have also found that older people sometimes find connect instructions difficult to follow, which results in failures to connect. Another important limitation is the cost associated with teleconferencing technology and the lack of third-party reimbursement (McCarty & Clancy, 2002; Nokes et al., 2003; Rounds, Galinsky, & Stevens, 1991). Yet even in the face of these limitations, teleconferencing has the potential to be an invaluable tool for helping caregivers, especially those who are disabled or unable to attend in-person meetings for other reasons.
Because the issues for adult child and spouse caregivers are distinct, we chose for this study to stratify for relationship to care recipient, so that each TSG comprised either adult children or spouses, rather than a combination of both. We did this in order to ensure that adult children and spouses would not misinterpret uncomfortable intergenerational family issues, and to enable them to raise these issues without fear that they might offend one another. Limiting groups to spouses or adult children helps to ensure that group leaders and members are able to address caregiver issues pertaining specifically to adult children and to spouses in a more focused manner. It also encourages the development of mutual support and camaraderie among the members of the group (Toseland, Labrecque, Goebel, & Whitney, 1992).
The TSG model is a 12-session telephone-group adaptation of an in-person support-group model that a number of studies have evaluated in the past decade (see, for example, Toseland et al., 1992; Toseland et al., 2001). This article advances the existing literature supporting telephone groups by providing a rigorous experimental design in order to assess the effectiveness of the TSG model and by testing it separately for spouse and adult child caregivers. Although other recent caregiver intervention studies have used telephone technology in conjunction with individual and family interventions for adult child and spouse caregivers (Bank, Arguelles, Rubert, Eisdorfer, & Czaja, 2006; Davis, Burgio, Buckwalter, & Weaver, 2004; Eisdorfer et al., 2003; Mahoney, Tarlow, & Jones, 2003; Mahoney, Tarlow, Jones, Tennstedt, & Kasten, 2001), all of these studies focused exclusively on caregivers with dementia, and none of these studies randomly assigned adult children and spouses to separate groups. This is the first study of which we are aware that assesses the effectiveness of telephone groups specifically for spouse and adult child caregivers of the frail elderly. We hypothesized that, compared to caregivers receiving usual services, both types of caregivers in TSG would experience short-term improvements in (a) burden, (b) depression, (c) anxiety, (d) social support, (e) pressing problems, and (f) knowledge and use of community services.
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Methods |
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We used two screening measures in order to ensure that caregivers included in the study could potentially benefit from the intervention. The 13-item Caregiver Strain Index generates an overall strain score and has good internal consistency (
=.86; Robinson, 1983). Caregivers had to score a minimum of 7 or higher on the Caregiver Strain Index in order to be eligible for the study. We used the Activities of Daily Living scale of the Older Americans Resources and Services instrument (OARS) in order to measure care recipients' basic and instrumental activity of daily living (ADL/IADL) impairments. In order to be eligible, care recipients had to exhibit two or more ADL/IADL impairments as reported by the caregiver. Researchers have examined extensively the psychometric properties of the OARS ADL/IADL scale as part of the overall testing of the OARS instrument, and these properties are well established (Fillenbaum, 1978). Because the ADL/IADL scale focuses on functional limitations of the care recipient, this study included caregivers of frail elders with physical or cognitive impairments.
During a 1-year period, 97 caregivers (61 children and 36 spouses) agreed to participate, passed the eligibility screen, and signed a consent form. We stratified caregivers by relationship to the care recipient and then randomly assigned them to receive either TSG or usual service on an ongoing basis. Once the research team had recruited 16 adult children or spouses, we randomly assigned them to TSG or usual service, took their baseline measures, and started a group for those assigned to TSG. Meanwhile, the research team recruited additional participants until they had another group of 16 spouses or adult children; we then formed and led another group for those in TSG. We repeated this process throughout an 18-month period until we had formed and led all groups. We randomly assigned a total of 61 adult child caregivers to TSG (n = 31) and to usual service (n = 30) and a total of 36 spouses to TSG (n = 22) and to usual service (n = 14). Seven spouse caregivers dropped out of usual service after random assignment but before taking pre-test measures for the following reasons: death of the care recipient (n = 4), institutionalization of the care recipient (n = 2), and moving away (n = 1). We excluded one participant from the study because we were unable to contact the caregiver after the initial contact. An analysis of demographic data revealed no significant differences between those who left the study and those who remained engaged. The recruitment process resulted in a total of 12 TSG groups (8 children-only groups; 4 spouse-only groups). Groups ranged in size from 5 to 8 members.
As can be seen in Table 2, the typical spouse caregiver in TSG was female, with an average age of 66.2 years. The typical child caregiver was also female, with a mean age of 54.9 years (Table 1). We found no significant differences between spousal or child participants in TSG and usual service on any of the demographic variables.
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Intervention Conditions
TSG
The TSG intervention was an adaptation of an in-person support-group model that consisted of 8 weekly 2-hour meetings. In order to accommodate the model to the telephone format, we increased the number of group sessions from 8 to 12 but shortened session length to 90 minutes: 15 minutes for hookup and 75 minutes for the actual group meeting. The same licensed Master's-prepared social worker (who had several years of clinical geriatric social work experience) led all groups.
TSG is a multicomponent intervention for caregivers that includes education about the effects of chronic illness and about emotion-focused coping strategies, problem solving, and support. We developed a leader's manual and a participant workbook (available at cost from the corresponding author). We used the leader's manual to train the group leader and gave a workbook to each member in the TSG arm of the study. The leader instructed members to turn to the appropriate pages in the workbook each week during telephone meetings and to follow along using the structured agendas and the educational materials that we had provided.
The first half of each weekly meeting began with conference call connections using a voice-over-Internet provider. After the initial period in which the leader called each member in turn, the group leader gave a brief overview of the previous meeting. Following this was a "check-in" with group members regarding their progress on target goals between meetings. In order to help group members develop supportive relationships beyond the TSG program, the leader asked each of them to select a telephone buddy to call between group meetings. Conversations between telephone buddies were to focus on caregiving issues and the coping and problem-solving skills participants were learning. The conversations were designed to encourage the development of mutual support among group members and to provide support to caregivers as they worked on behavior change goals between meetings.
Emotion-focused coping strategies were taught and practiced during the first half of each weekly TSG meeting. Emotion-focused coping is based on Stress Inoculation Training (Meichenbaum, 1977, 1985; Meichenbaum & Cameron, 1983) and utilizes strategies such as didactic teaching, cognitive restructuring, perspective taking, relaxation training, self-monitoring, and self-instruction. The social worker leading the group described the techniques and encouraged members to practice them in each TSG meeting and between meetings. The leader encouraged members to set at least one specific goal for taking better care of themselves, or for behaving differently with the care recipient, that they could work on between meetings. The leader encouraged members to incorporate newly learned emotion-focused coping skills into the action plans they developed in order to achieve the specific goals they had set for themselves.
The group leader introduced problem-focused coping skills during the second half of each meeting and practiced them with the members. Problem-focused coping started by having members identify pressing problems that they wanted to work on in the group. The leader used a 6-step problem-solving model in order to help caregivers become effective in identifying and solving their problems.
The third component of the TSG model, support, was interwoven throughout each group meeting. The group leader helped members to (a) ventilate their feelings and concerns, (b) provide and receive empathetic understanding, (c) share different ways of coping with caregiving (i.e., peer helping), (d) feel hopeful about their situation, (e) play useful and meaningful roles by sharing their knowledge and experience with others in the group, and (f) provide peer models of how to deal effectively with stressful caregiving issues.
We monitored TSG sessions for treatment integrity and fidelity by audio-taping each session. A practicing and licensed clinical social worker, with an MSW and PhD degree in social work reviewed the tapes of each session. The social worker scored each tape with a rating form in order to verify that the leader conformed to the TSG intervention design. This same individual provided weekly TSG consultation and supervision to the group leader.
Usual Service
Caregivers in the usual service condition received the usual services offered by the senior services center. Caregivers in usual service were offered TSG after the initial 12-week group intervention period and after the completion of the post-test interview. Per the human subjects consent form, participants were free to seek medical, psychological, social support, and social services in the community at any point during the study.
Measurement and Measures
Graduate assistants conducted telephone interviews with participants within 2 weeks prior to the intervention and again within 2 weeks of completing the intervention. Interviewers gave those caregivers initially assigned to usual service a third interview if they chose to participate in TSG after the initial study period. Trained graduate assistants who were kept blind to condition assignment interviewed participants.
Medical Outcomes Study (MOS) Social Support Survey(SSS)
We used the SSS in order to assess how much tangible support, affectionate support, positive social interaction, and emotional or information support caregivers received. The measure consists of 19 questions. Scores are computed for 4 subscales, utilizing 18 of the questions. A total SSS score is computed by transforming the mean score of all 19 items. For each question, we asked respondents, "How often is each of the following kinds of support available to you if you need it: (1) none of the time, (2) a little of the time, (3) some of the time, (4) most of the time, or (5) all of the time?" We obtained the tangible support subscale score by calculating the mean of responses to 4 items; we calculated the affectionate support and positive social interaction subscale scores by obtaining the mean of responses to 3 separate items; and we calculated the emotional/informational support subscale score by obtaining the mean of responses to 8 items. We transformed scores for each subscale in order to compare them to published means for the SSS. We calculated the transformation of scores by using the following formula: 100 x (observed score – minimum possible score)/(maximum possible score – minimum possible score). Scores range from 0 to 100, with higher scores indicating higher levels of social support. The reliability coefficients for the SSS range between.72 and.76 for the four subscales and.78 for the overall scale (Sherbourne & Stewart, 1991).
Zarit Burden Interview (ZBI)
The ZBI is a 22-item Likert-type scale that measures the total strain, role strain, and personal strain that caregivers experience as a result of the impact of the patient's disabilities on their life. It was designed to assess the stresses experienced by family caregivers of elderly persons. For each item, caregivers indicate how often they have felt a certain way: (0) never, (1) rarely, (2) sometimes, (3) quite frequently, or (4) nearly always. Higher scores signify higher levels of burden. Researchers have estimated internal reliability for the ZBI with Cronbach's alpha at.88 (Hassinger, 1986) and.91 (Gallagher, Rose, Rivera, Lovett, & Thompson, 1989).
Center for Epidemiologic Studies–Depression Scale (CES-D)
We measured depression by using the CES-D. We asked respondents to determine how frequently they had experienced 20 different events in the past 7 days. These events are indicative of depression. Each event has a score of 0 (happened rarely or not at all) to 3 (most or all of the time). Higher scores indicate more depression. We selected the CES-D because normative data for both community and psychiatric patients are available. The CES-D has good reliability and validity (reliability =.57) and correlates strongly with other standardized measures of depression (Radloff, 1977).
State–Trait Anxiety Inventory (STAI)
This scale measures anxiety for caregivers. It presents 20 statements that people use to describe themselves and asks caregivers the extent to which they agree (4) or disagree (1) with each statement. The final score is a summary of the answers to the 20 statements. Higher scores indicate more anxiety. Scientists have used the STAI extensively in research and practice. The STAI has shown itself to have excellent psychometric properties for the assessment of anxiety in elderly persons (Spielberger, 1983).
Pressing Problems Index (PPI)
Researchers developed the 18-item PPI in order to assess the extent to which participants' health and social service problems were being addressed. The PPI contains a list of problems that caregivers frequently encounter when caring for a family member with a chronic illness. For each problem, we asked the caregiver how stressful the problem was, from (0) not at all to (4) extremely; how much their stress had changed, from (–3) much worse to (3) completely better; how effective they had been in dealing with this problem, from (0) not at all effective to (4) extremely effective; and how much their effectiveness had changed from (–3) much worse to (3) completely better. Toseland and colleagues have used variations on the PPI in previous research (see, for example, Toseland et al., 2001; Toseland, McCallion, Smith, & Banks, 2004).
Community Services Inventory
We used this scale in order to determine the extent to which participants' community and social services needs were being addressed. We asked caregivers three questions regarding 21 services: (a) Did the caregiver know about the service? (b) Did the caregiver know how to access the service? and (c) Had the caregiver used the service in the past year? We scored the answers as (1) yes and (0) no. We treated the three questions as subscales and gave each a summary score of 0–21. A higher score represented more knowledge about community services, greater knowledge of how to access these services, and a higher use of community services. Researchers originally developed the Community Services Inventory for a previous study of caregiver support groups (Toseland, Rossiter, & Labrecque, 1989) and have modified and used it in several studies since that time (Toseland et al., 2004; Toseland et al., 2001).
Data Analyses
We compared baseline demographic variables by using independent sample t tests and chi-square tests. Random effects regression models (RERMs) was the primary analytic method used for analyzing outcome variables. RERMs are also referred to in the literature as variance components models, random or mixed-effects models, random coefficient models, two-stage models, multilevel models, and hierarchical linear models (Hedeker, 1995). We used the Proc Mixed subroutine version 9.1 in the SAS statistical package (SAS Institute, Cary, NC). We analyzed outcome measures given at baseline and again at post-test by using RERMs in order to test for the effects of condition, time, and condition by time interaction. We considered condition by time interaction effects to be most important because we hypothesized significant different changes over time in outcomes for participants in the two arms of the study rather than significant main effects of condition or time. Because of their ability to include cases with missing data and other analytic advantages, RERMs offer several benefits over more traditional repeated measures designs or nonparametric tests for analyzing data from randomized field trials with data collected over time (Gibbons, Hedeker, & Elkin, 1993; Hedeker).
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Table 3 reveals significant interaction effects for the three subscales of the ZBI. Adult children in TSG had significant decreases in total strain over time. Their role strain and personal strain were both significantly reduced over time. In comparison, adult children in usual service had increases in total strain, role strain, and personal strain from baseline to 12 weeks.
There were also significant interaction effects for symptoms of depression for adult children. The means in Table 3 reveal that depressive symptoms decreased for adult child caregivers in both arms of the study. However, the depressive symptoms of TSG participants decreased significantly more than those of usual service participants.
We found no significant differences among adult child caregivers in the two arms of the study for the STAI. Although Table 3 indicates that TSG participants had a decrease in anxiety over time and participants in usual service had an increase in anxiety over time, this difference was not large enough to be statistically significant.
Table 3 reveals that there were significant interaction effects for adult children on the four subscales of the PPI. The means reveal that adult child caregivers in TSG experienced significantly greater decreases in the level of stress of pressing problems over time than did those in usual service. Caregivers in TSG reported feeling more able to change stress over time, whereas caregivers in usual service reported feeling less able to change stress over time. With respect to effectiveness when dealing with pressing problems, caregivers in TSG felt that their level of effectiveness significantly increased over time, whereas those in usual service reported a decrease in their effectiveness over time. Also, the adult child caregivers in TSG reported having greater feelings of effectiveness to manage pressing problems over time, whereas those in the control condition reported feeling less confident in their abilities to deal effectively with pressing problems over time.
With regard to the Community Services Inventory, the data presented in Table 3 indicate that there were significant interaction effects for knowledge of services, knowledge about how to access services, and use of services in the last year. The means reveal that adult children receiving TSG had increased knowledge of services, had greater knowledge of how to access services, and used more services over time, whereas adult children in usual service showed decreases in all three of these measures.
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We did not find these same effects for spouse caregivers. We investigated several plausible methodological explanations for the discrepancy in findings about the effectiveness of TSG for adult children and spouses. We investigated whether, because of the small sample of spouses, the study was underpowered with respect to this subgroup, which in turn might have resulted in the lack of statistically significant results. However, retrospective power analyses using Nquery 5.0 (Statistical Solutions, Saugus, MA) revealed only very small effect sizes in the outcome measures for spouses in TSG. Therefore, even with a larger sample size, these effects would not have been significant.
We also examined whether ceiling or floor effects in the measurement of outcome variables could have accounted for the differences in outcomes between adult children and spouses. There were no appreciable differences in the mean scores on the outcome variables for spouses and children at pretest, and we observed no ceiling or floor effects. In addition, the adult children in TSG demonstrated significant changes in many of the outcome measures. This suggests that measurement problems were not a plausible explanation for the difference in effectiveness of TSG for spouses and adult children. We also analyzed the treatment integrity and fidelity findings, but we found no difference in the way TSG had been delivered to spouses or adult children.
One methodological explanation for the findings that cannot be ruled out is that the loss of eight spouses from the control condition after random assignment to conditions may have affected the results. Even though there were no significant demographic differences between those who dropped out and those who remained, it may be that this differential attrition affected the outcomes for spouses in some unknown way that we did not measure. This methodological issue should therefore be considered a limitation of the study results.
There are several other plausible explanations for the disparity between the effectiveness of TSG for adult children versus spouses. It may be that spouses prefer in-person groups and do not benefit as much as adult children from telephone groups. Qualitative comments made by TSG participants indicated that spouses were more frustrated than adult children with the dynamics of the telephone group meeting and that they particularly regretted not being able to see the people to whom they were talking. Spouses also expressed a desire to meet in person with group participants during and after the cessation of TSG. Spouses were more likely to be retired and may have been at home for longer periods of time than adult children, who were more likely to have been working outside the home. Therefore, spouses may have been more likely than adult children to use TSG as a vehicle for socialization in addition to learning coping and problem-solving skills. Unlike the adult children, who frequently did not live with the care recipient, spouses may also have welcomed the respite from caregiving that attending an in-person group can provide. Being older and of a different age cohort, spouses may also have been less used to conference-calling technology than were the adult children. In contrast, some adult children mentioned that meeting in person would have been burdensome on their schedules. They appreciated the ease with which TSG enabled them to participate without taking the time to travel. Overall, the telephone format seemed to address the particular time needs of adult children effectively while failing to meet the socialization and respite needs of some spouses.
Another possibility for the disparity between the effectiveness of TSG for adult children and spouses is that, although older adults are becoming increasingly greater users of technology, and technological advances such as teleconferencing and the Internet have great appeal to many elders, older adults as a group may still be less comfortable with teleconferencing technology than younger adults. This is likely to change as older adults are exposed to technological advances and as the baby boom generation reaches old age. Although some older adults may be uncomfortable with new technology (such as teleconferencing and Internet groups), gerontologists and other human service professionals have a responsibility to give them the opportunity to try out new technologies and to help them overcome perceived barriers to using them.
Yet another potential explanation for the disparity between the effectiveness of TSG among adult children and spouses could be that adult children benefit more than spouses from support groups because caregiving is an "off-time" event for adult children. The effect sizes in some of our previous studies, in which we intervened with adult children or with spouses (see, for example, Toseland et al., 1992; Toseland et al., 1989) support this speculation, but additional research is needed. Clinically, adult children may need more resources than do spouses to help them perform effectively in what is perceived to be a non-normative caregiving role. The TSG intervention provides a framework for addressing pressing problems associated with caregiving. Adult children may benefit more from TSG because meeting with other adult children in similar circumstances may help them to normalize the caregiving experience. TSG provides information, coping strategies, and support for dealing with unexpected caregiving demands.
Adult children are generally less likely than spouses to have provided care in the past. Spouses are more likely than adult children to have already provided care to their spouse or to another family member for an extended period of time. And because they are much more likely than their adult children to be living with the care recipient, spouses may observe declines earlier and provide care over an extended period, even though not defining themselves as caregivers. When describing their caregiving career, some spouses spontaneously mention that they have been providing care to a spouse for many years, albeit at lower intensity levels.
Readers should consider several limitations when interpreting these results. First, the same leader with an MSW degree and several years of clinical experience led all groups. Because of this, we were unable to disentangle the effects of leadership and group; different results might have occurred if the groups had been led by another leader. Another limitation is that TSG is a multicomponent intervention, and we were not able to disaggregate the effects of individual components on overall outcomes. Finally, the TSG intervention is designed for caregivers who can hear the other group members over the telephone. Because we did not encounter hearing-impaired individuals during screening interviews or during group sessions, we believe that hearing-impaired individuals self-screened, opting not to volunteer to be participants in this study.
Overall, adult children's relationships with aging parents are qualitatively different than relationships among spouses, and work and family pressures may exert greater or different role strains on adult children than on spouses. The TSG intervention introduced adult child caregivers to others who were in similar situations. It focused on providing information and coping skills for dealing with stress and pressing problems, and it encouraged participants to develop action plans to take better care of themselves. Findings from this study suggest that these foci may be more effective for children than for spouses.
Because this is the first randomized trial to specifically examine the differential effectiveness of TSG on adult child and spouse caregivers, additional studies are needed to verify these results. It remains unclear from this study whether differential dropout by spouses from the control condition may have affected the results. It is also unclear whether something about the TSG intervention per se caused the differential effectiveness for adult children, or whether other caregiver psycho-educational programs conducted on the telephone would have had similar results. If the results of this study are verified by other studies, then additional research will be needed in order to determine how to enable caregiver support groups to be as effective for spouses as they are for adult children.
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1 Institute of Gerontology, Sociology Department, University at Albany, State University of New York.
Decision Editor: Linda S. Noelker, PhD
Received for publication October 28, 2005. Accepted for publication April 24, 2006.
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