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Implementation of a Psychoeducational Program for Cancer Survivors and Family Caregivers at a Cancer Support Community Affiliate: A Pilot Effectiveness Study

Dockham, Bonnie LMSW; Schafenacker, Ann MSN, RN; Yoon, Hyojin PhD, RN; Ronis, David L. PhD; Kershaw, Trace PhD; Titler, Marita PhD, RN, FAAN; Northouse, Laurel PhD, RN, FAAN

doi: 10.1097/NCC.0000000000000311
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Background: Psychoeducational interventions, tested for efficacy in randomized clinical trials, are seldom implemented in clinical practice where cancer survivors and their family caregivers can benefit from them.

Objective: This study examined the effectiveness of the FOCUS Program on cancer survivors’ and their family caregivers’ outcomes when implemented at a Cancer Support Community (CSC) affiliate by agency social workers. Study aims were to (1) test effects of the program on survivor and caregiver outcomes as a unit and (2) determine program feasibility in terms of enrollment, retention, intervention fidelity, and satisfaction.

Methods: A preintervention and postintervention pilot effectiveness study was conducted with 34 cancer survivor-caregiver dyads (ie, pairs). The FOCUS Program, originally delivered by nurses in dyads’ homes, was modified to a small-group format and delivered by CSC social workers. The primary outcome was quality of life (QOL). Intermediary outcomes were benefits of illness/caregiving, communication, support, and self-efficacy. Analyses included repeated-measures analysis of variance.

Results: Dyads had significant improvements in total QOL; physical, emotional, and functional QOL; benefits of illness; and self-efficacy. Effect sizes were similar to prior randomized clinical trial findings. Although dyads were difficult to recruit (enrollment, 60%), both retention (92%) and intervention fidelity (94%) were high.

Conclusions: It was possible to implement the FOCUS Program at a CSC affiliate by agency staff, obtain positive intervention effects, and maintain intervention fidelity.

Implications for Practice: Researchers and clinicians need to collaborate to implement more evidence-based interventions in practice settings for cancer survivors and their family caregivers.

Author Affiliations: Cancer Support Community of Greater Ann Arbor, Michigan (Ms Dockham); School of Nursing, University of Michigan, Ann Arbor (Ms Schafenacker and Drs Ronis, Titler, and Northouse); School of Nursing, Loyola University, Chicago, Illinois (Dr Yoon); and School of Public Health, Yale University, New Haven, Connecticut (Dr Kershaw).

The study was funded by a grant from the Rosalynn Carter Institute for Caregiving (Ms Dockham, principal investigator).

The authors have no conflicts of interest to disclose.

Correspondence: Laurel Northouse, PhD, RN, FAAN, School of Nursing, University of Michigan, 400 N Ingalls, Ann Arbor, MI 48109 (lnortho@umich.edu).

Accepted for publication August 18, 2015.

There is a widening gap between the existence of innovative, evidence-based programs developed to reduce the burden of chronic disease in the United States and the availability of these programs in community practice settings.1 In oncology, interventions have been designed to provide education and support to cancer survivors and their family caregivers to improve their quality of life (QOL). However, these interventions seldom move from academic institutions, where they were developed and tested for efficacy, to community settings, where people can benefit from them.2 Only a limited number of evidence-based interventions have been disseminated or implemented in oncology practices.3–5 A multifaceted partnership approach is needed to accelerate the translation of research into practice.1

Research indicates that cancer survivors and their family caregivers need more information and support, but these needs are seldom addressed by health professionals.6 Cancer survivors receive state-of-the-art medical care, but little help dealing with the detrimental effects of the illness on their mental and physical QOL.7 Their family members are responsible for providing complex care in the home, but receive little professional guidance, education, or support to provide the kind of care expected from them. Without assistance, caregiversself-efficacy can decrease, and their emotional distress can increase, creating a negative impact on their ability to provide high-quality care in the home.8

To address the availability of research-based programs for practice, this study was designed to test the effectiveness of the FOCUS Program, an evidence-based program of care for cancer survivors and their family caregivers, using a small-group intervention format at an affiliate of the nonprofit organization, Cancer Support Community (CSC). The original FOCUS Program, a nurse-delivered, home-based program, was developed for cancer survivors and one of their family caregivers (ie, pairs or dyads) by researchers in an academic setting and tested for efficacy in 3 randomized clinical trials (RCTs).9–11 Several positive outcomes were found for cancer survivors and/or their family caregivers who were randomly assigned to the FOCUS Program versus standard care in the various RCTs. Significant effects from the FOCUS Program included less negative appraisal of illness9,10 or caregiving,9,10 less uncertainty,10 less hopelessness,9,10 better dyadic communication,10 more effective coping,10,11 higher self-efficacy,10,11 and better social, mental, or physical QOL,10,11 with some effects extending to follow-ups at 6 months and 1 year. These trials documented the efficacy of the FOCUS Program when offered within tightly controlled clinical trials but not the effectiveness of the program when implemented by staff in an agency setting. Further research was needed to determine if the positive effects of the FOCUS Program were retained when it was implemented using a group intervention format at a CSC affiliate by oncology social workers employed by the agency.

Specific aims of this study were (1) to test the effectiveness of the FOCUS Program on cancer survivors’ and their family caregivers’ QOL (primary outcome) and perceived benefits of illness, dyadic communication, social support, and self-efficacy (intermediary outcomes) as a unit from preimplementation to postimplementation and (2) to determine the feasibility of offering the program at the CSC site using a group intervention format based on enrollment and retention rates, intervention fidelity, and survivors’ and caregivers’ satisfaction with program content and delivery.

Stress-coping theory12 was used to develop the FOCUS Program and guide the selection of variables for this effectiveness pilot study (Figure 1). According to the theory, appraisal of the illness is a central factor in the coping process. Survivors and caregivers who have more positive appraisals of the illness/caregiving, who are able to find meaning and purpose in the illness experience, and who can identify possible benefits of the illness/caregiving in their lives (eg, draws family closer together) report higher life satisfaction13 and QOL.14 In addition, survivors and their family caregivers who have resources to help them manage the illness are able to maintain a higher QOL.15 More specifically, survivors and caregivers who are able to communicate effectively with one another about the illness and who can obtain social support from family and friends, report higher QOL.16 Research also indicates that cancer survivors and family caregivers with higher self-efficacy (ie, more confidence in their ability to manage the disease, treatment, and adverse effects) report fewer depressive symptoms8 and higher QOL.17 Since we tested the stress-coping model previously,18 this study examined the effectiveness of the FOCUS Program on study outcomes. Based on this model, we hypothesized that the FOCUS Program, which provides information and support jointly to survivors and their family caregivers as the unit of care, would increase their positive appraisal of the illness (ie, benefits of illness and caregiving), increase their coping resources (ie, dyadic communication, social support, self-efficacy), and improve their QOL.

Figure 1

Figure 1

Our effectiveness study was also guided by the translational research model developed by Titler and Everett,19 which they based on the diffusion of innovations model by Rogers.20 This translation model was adapted for our study (Figure 2) and posits that adoption of an evidence-based program is influenced by multiple factors such as the program’s characteristics; the communication process that occurs between the people who developed the program and those who will be offering the program; the health care agency, which is the social system where the program will be implemented; and health care professionals (ie, users) who will implement the program. As indicated in the model, program adoption is more likely to occur if implementation results in positive outcomes and high satisfaction ratings by participants and is feasible in terms of enrollment, retention, and intervention fidelity. This translation model also has guided other translational research studies.21–23

Figure 2

Figure 2

The pilot study took place at the CSC of Greater Ann Arbor (CSC–Ann Arbor), an agency that provides psychosocial care at no cost to people with cancer and their family caregivers who reside in the community. The local CSC affiliate is one of a large network of CSC sites in the United States and in several other countries (>50 sites). Cancer Support Community has an international reputation for delivering high-quality, evidence-based programs for cancer survivors and their caregivers.24 In recent years, the CSC organization recognized the growing demands on family caregivers to provide complex care in the home, the gap in services available to assist them, and the need for evidence-based programs that provide education and support to survivors and their caregivers jointly within their network of community-based agencies.

The executive and program directors of the CSC–Ann Arbor learned about the FOCUS Program and began meeting with the researchers at the University of Michigan to learn more about the program’s content and delivery. They formed a strong academic-community partnership and obtained a grant from the Rosalynn Carter Institute for Caregiving and Johnson & Johnson to conduct a pilot study to test the effectiveness of implementing the FOCUS Program at the CSC affiliate in Ann Arbor, Michigan, using a group intervention format. This affiliate was an ideal site for the pilot because the staff consisted of master’s degree–prepared oncology social workers who were already providing care to people with cancer and who saw the need to broaden their services to survivors and family caregivers as the unit of care.

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Methods

Design

A preintervention and postintervention design (no control group) was used. We examined the effects of the program on patient-caregiver dyads’ primary outcome (QOL) and their intermediary outcomes (benefits of illness, dyadic communication, social support, and self-efficacy). We also examined the feasibility of delivering FOCUS at a CSC using a group intervention format (ie, enrollment and retention rates, intervention fidelity, and program satisfaction).

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Participants

Cancer survivors at CSC–Ann Arbor were eligible for the study if they were 18 years or older, mentally and physically able to participate as determined by the intake social worker, and able to speak and read English and had a family caregiver willing to participate in the program. “Survivor” was any person who received a diagnosis of cancer from the time of initial diagnosis until his/her death.25 Survivors with any type or stage of cancer were eligible for the study in keeping with the heterogeneous composition of groups at CSC sites. Caregivers were eligible if they were 18 years or older, mentally and physically able to participate, able to speak and read English, and willing to participate in the study. “Family caregiver” was defined as anyone who provided emotional support, physical support, or both to the person with cancer, without pay.

A power analysis26,27 based on repeated-measures analysis of variance (time 1 vs time 2), using a medium effect size based on our previous RCTs9–11 with α set at .05, indicated a sample size of 34 dyads was needed. Because we expected an enrollment rate of 80% and a retention rate of 70%, we sought a sample of 60 eligible dyads and projected retaining 34 dyads.

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Procedures

RECRUITMENT

After the study received approval from the institutional review board at the University of Michigan, several strategies were used to recruit potential participants. The primary method was from the agency site. Specifically, all new members were educated about the program and screened for interest and eligibility. The program was announced in the CSC–Ann Arbor newsletter, which is distributed to more than 5000 people bimonthly, and e-mail announcements were sent to CSC’s contact list of more than 1000 people periodically. Program flyers were placed strategically in public places in the community (ie, coffee shops) and clinics. Participants were also actively recruited through existing affiliate contacts and within the cancer clinics at a nearby comprehensive cancer center and at a community hospital. Relationships were nurtured with direct care providers to establish champions for the program within the cancer center and hospital clinics. Lastly, a description of the study was listed on the university’s clinical research Web site for volunteer recruitment. This Web site was open to members of the public.

Survivors and caregivers who were willing to participate in the study had an interview with the CSC intake social worker to confirm their interest and eligibility. Upon enrollment, survivors and their caregivers provided consent and agreed to attend all program sessions. Questionnaires were completed separately by patients and caregivers prior to the intervention (time 1) and immediately following completion of the 6-week program (time 2).

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FOCUS Program for the CSC

At the CSC, programs are offered typically in 6 small group sessions to reduce delivery costs and enable participants to support and learn from one another. Research staff who delivered the original FOCUS Program met with the program director at CSC–Ann Arbor on a weekly basis to discuss modifications that needed to be made to the original 5-session FOCUS Program to ensure that the FOCUS Program would be implemented within the CSC agency philosophy and structure. Collectively, they agreed to modify the original 5-session FOCUS Program, previously offered to 1 patient and family caregiver at their home, to a 6-session program that was offered as a small-group intervention (3–4 dyads), consistent with other CSC program offerings. To facilitate the translation process, they developed a grid to ensure that the content in the group intervention included the same 5 core areas (F-O-C-U-S) as in the original home-based FOCUS Program, but was spread out over 6 group intervention sessions (Table 1). The detailed content of the original FOCUS protocol was not changed, but ground rules for effective group process were added to the CSC FOCUS protocol. In addition, because all clinicians at the agency were social workers with master’s degrees, the original specification that the FOCUS Program be implemented by master’s degree–prepared nurses was modified to enable the CSC social workers to implement the program. It was decided that the maximum enrollment per intervention group would be 4 survivor-caregiver dyads (ie, 8 participants) in order to ensure intimacy, allow each member to participate, and provide time to cover the content itemized in the FOCUS protocol. Survivors who had different types of cancer and who were at various stages of cancer were allowed to participate, consistent with the organization’s existing model of program delivery.

Table 1

Table 1

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TRAINING OF STAFF

The program director of CSC–Ann Arbor, who is a master’s degree–level oncology social worker, accompanied FOCUS intervention nurses on visits to the homes of patients and family caregivers who were participating in the FOCUS Program in a separate study. By shadowing the FOCUS nurse, the CSC program director was able to observe the nature of the interactions that occurred between the patient, family caregiver, and intervention nurse. Following this initial introduction, a training program was developed in collaboration with the CSC program director and FOCUS Program project manager to train other agency staff.

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INTERVENTION FIDELITY

To ensure fidelity, the social workers who led the intervention groups used the revised FOCUS protocol manual over 6 sessions. This included a checklist of interventions that needed to be addressed in each of the intervention sessions. In addition, the CSC social worker, who delivered FOCUS, met regularly with the principal investigator and project manager of the FOCUS research team to discuss intervention fidelity and to address any problems that arose in the group intervention being offered. These meetings were held weekly initially for an hour and on an as-needed basis throughout the remainder of the program implementation, which extended over 2½ years. During the study, intervention groups consisting of 3 to 4 survivor-caregiver dyads were formed. Twelve different survivor-caregiver intervention groups were conducted over the 2½ years that the program was implemented at CSC–Ann Arbor.

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Instruments

Several instruments were used to measure study outcomes. These instruments were used in our prior RCTs9–11 that tested the efficacy of the FOCUS Program. Internal consistency reliabilities were assessed before and after the intervention.

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Primary Outcomes

Quality of life was measured with the Functional Assessment of Cancer Therapy–General (FACT-G) Quality of Life instrument (version 4), a 27-item instrument that measures cancer-specific QOL. The FACT-G assesses overall QOL (total score), as well as 4 domains of QOL: emotional, social, physical, and functional.28 A modified version of the FACT-G (adapted with permission from FACIT.org) was used to assess caregivers’ QOL.29 The FACT-G has established validity28 and demonstrated high internal consistency in our prior studies9–11 with cancer survivors and their family caregivers. Overall scores on the FACT-G can range from 0 to 108, with higher scores meaning higher QOL.

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Intermediary Outcomes

Perceived benefits of illness were measured with an 11-item, modified version of the Benefit of Illness Scale originally developed by Tomich and Helgeson.30 The scale measures benefits arising from an illness experience (eg, “Having cancer has brought my family closer together”).30 Tomich and Helgeson30 reported that the scale was unidimensional and had high internal consistency reliability. Individual items were summed, and a mean score was obtained. Scores can range from 1 to 5; higher scores indicate more perceived benefits of illness.

Dyadic communication was measured with the Lewis’31 Mutuality and Interpersonal Sensitivity Scale. It is a 23-item scale that assesses the degree of open communication about the illness in survivor-caregiver dyads and their ability to share feelings with one another (eg, “We keep the communication open between us about cancer”). Lewis31 established the validity and reliability of the scale. It also demonstrated high internal consistency reliability in our prior studies.9–11 Individual items are summed, and a mean score is obtained. Scores can range from 1 to 5; higher scores indicate more perceived open communication with one another.

Social support was assessed with the 7-item Support Scale, derived from the longer Social Support Scale (eg, “My family member supports me as I try to cope with the illness”).32 The validity and reliability of the original scale were established.32 Individual items are summed, and a mean score is obtained. Scores can range from 1 to 7. Higher scores indicate more perceived support among survivors and caregivers.

Self-efficacy was assessed with Lewis’31 Cancer Self-efficacy Scale, a 17-item scale that assesses survivors’ and caregivers’ confidence for managing the illness or the caregiving associated with it (eg, “I am confident that I can call on my inner strengths to cope with the cancer and treatments”). The validity and reliability of the scale were established by Lewis,31 and it has demonstrated high internal consistency reliability in multiple studies.9–11 Scores can range from 0 to 170; higher scores indicate more perceived confidence to manage the illness or caregiving.

Demographic and medical information was collected with a researcher-designed questionnaire and assessed information such as age, gender, race, cancer stage, and treatment received.

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Feasibility Measures (Aim 2)

Feasibility was measured by enrollment and retention rates, intervention fidelity, and participants’ satisfaction with the program. Enrollment and retention were assessed by examining records kept by the on-site CSC research coordinator that included information about the source and number of referrals, enrollment rates, and retention rates. Intervention fidelity was assessed by the number of interventions that were checked as completed in the FOCUS Intervention Protocol Checklist for each group session. Satisfaction was assessed at the end of the program with the FOCUS Process Evaluation (modified for the group delivery format) used in our previous RCTs.33,34 This instrument was included in the postgroup questionnaire packet and was the same for both the survivor and caregiver. Using a 5-item satisfaction scale, participants evaluated how satisfied they were with the core components of the program (eg, family involvement, optimistic attitude, coping effectiveness, uncertainty reduction, and symptom management), with a possible range of satisfaction scores from 1 (low) to 5 (high). Additional questions asked participants if the program helped them cope with the illness, whether it duplicated any services offered by their cancer center, and if they would make any changes in the program. Participants also completed open-ended questions asking them to describe the most and least beneficial aspects of the program.

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Data Analysis

To meet aim 1, repeated-measures analysis of variance was used to determine if changes occurred between primary and intermediary outcomes from time 1 to time 2 for patients and caregivers, as dyads (ie, pairs). We used dyadic analyses because of the increasing evidence that patients’ and their family caregivers’ responses to illness are interrelated.35,36 Time and role (ie, survivor vs caregiver) were treated as within-subject variables to control for the interdependent nature of the data. Main effect by time was examined to determine the overall effectiveness of intervention on primary and intermediary outcomes for survivor-caregiver dyads as a unit (average scores across dyads). We also analyzed time-by-role interactions to determine if there was a differential effect of the intervention on survivors’ and caregivers’ outcomes. We also examined intervention effect sizes for specific variables based on conventional standards (small = 0.20, medium = 0.50, large = 0.80).26

Aim 2 used descriptive statistics to examine enrollment and retention rates and to calculate the intervention fidelity ratings from the FOCUS Protocol Checklist. Fidelity was calculated by dividing the number of interventions documented as provided in each program by the number of interventions listed in the protocol checklist. Descriptive statistics were also used to examine survivors’ and caregivers’ satisfaction (using their individual scores) with the program when offered as a group intervention by CSC agency staff. Follow-up exploratory analyses were conducted to determine if there were differences in survivors’ and caregivers’ satisfaction ratings using paired t tests.

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Results

Description of the Sample

A consort diagram is shown in Figure 3 and indicates the recruitment, enrollment, and retention of survivor-caregiver dyads in the study. The average age of survivors was 54 (SD, 11.0) years, and that of caregivers was 53 (SD, 11.1) years (Table 2). The majority of survivors was female (73%), and that of caregivers was male (64.9%). Most patients (89.2%) and caregivers (86.5%) were white. Most caregivers (91.9%) were spouses. More than half of the survivors (59%) had advanced (stage III or IV) cancer.

Table 2

Table 2

Figure 3

Figure 3

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Changes in Survivors’ and Caregivers’ Scores Before and After the Intervention

The effectiveness of the FOCUS Program delivered in 1 CSC affiliate using a group intervention is illustrated in Table 3. From preintervention to postintervention, dyadic scores for survivors and their caregivers as a unit (ie, pair) showed a significant increase in total (P = .002), physical QOL (P = .019), emotional QOL (P = .004), and functional QOL (P = .003). In addition, there was a significant increase in dyads’ perceived benefits of illness (P = .032) and self-efficacy (P = .002). Effect sizes for these findings are shown in Table 3. Although we anticipated that participating in the group intervention would enhance survivors’ and caregivers’ dyadic communication and their dyadic support, no significant changes were found for these 2 variables from preintervention to postintervention.

Table 3

Table 3

There were no significant time-by-role interactions (Table 3), indicating that the effect of the intervention was not significantly different between survivors and caregivers, but that the intervention had effects for the dyad overall as a unit. However, it should be noted that the effect sizes in Table 3 were larger for survivors than caregivers, although these differences did not reach significance.

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Feasibility

Feasibility was examined by enrollment and retention rates, intervention fidelity, and satisfaction. The enrollment rate was 60%, and retention rate was 92%. Intervention fidelity was assessed by the number of interventions listed in the FOCUS Protocol Checklist that were checked as completed in each intervention group by the social worker who led the group. A total of 77 interventions are listed in the protocol checklist, and 73 interventions (on average across intervention groups) were marked as completed, indicating high intervention fidelity of 94%.

Both survivors and caregivers reported high satisfaction with the program on the 5-item satisfaction scale. Survivors’ and caregivers’ mean satisfaction scores did not differ significantly (survivors: 4.26 [SD, 0.8]; caregivers: 4.34 [SD, 0.7]). In addition, the majority of survivors (88.2%) and caregivers (85.7%) said the program helped them to cope with the cancer, and most survivors (88.6%) and caregivers (82.9%) also said the program did not duplicate anything they received from their cancer center. Nearly all survivors and caregivers (97.1% each) said that they would recommend the program to other cancer survivors and their family caregivers.

When asked about changes they would recommend to the existing program, 42.9% of the survivors and 45.7% of the caregivers reported that they would have liked more group intervention sessions, and approximately 40% of the dyads would have liked more information on topics such as “talking with your physician” and “availability of other resources.” Survivors and caregivers also were asked what they thought were the most and least beneficial aspects of the program (Table 4). In general, many participants reported that the most beneficial aspect was being able to communicate with other couples dealing with cancer in a safe, supportive environment.

Table 4

Table 4

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Discussion

The objectives of this pilot study were to determine the effectiveness and feasibility of delivering the FOCUS Program by social workers with masters’ degrees, in a group intervention format at a CSC affiliate site. The original FOCUS Program, previously delivered in the home to 1 dyad by a nurse, was easily translated into a group intervention. Survivors and their family caregivers who participated in this program had a significant improvement in their overall QOL and physical, emotional, and functional QOL from preintervention to postintervention. They also reported significant improvement in their perceived benefits of illness and self-efficacy to manage the illness.

The small-group delivery of the FOCUS Program (3–4 dyads per group) gave participants the opportunity to meet with others in a similar situation, share concerns, and learn ways to manage the stress of illness/caregiving from others in the group intervention and from the group facilitator. Participants reported that the most beneficial aspect of the program was being able to communicate with other couples dealing with cancer. Group interventions offer an additional component of normalization and validation from peers.37 The combination of empathic support from group members, information provided in the FOCUS Program, and supportive guidance from the group leader may have helped to increase dyads’ QOL and perceived benefits of illness. In a number of studies using group interventions with cancer survivors, investigators have reported that the exchange of social support and information was the mechanism through which change occurred and that the group was central to generating benefit finding among participants38,39 and enhancing their QOL.38,40 In addition, modifying the original FOCUS Program to an intervention group format created a dynamic that allowed group members to empower each another. Discussion around program content was often initiated by participants, not the facilitator. This atmosphere of empowerment, as well as the support and information obtained in the group intervention, may account for survivors’ and caregivers’ improved self-efficacy from preintervention to postintervention.

In qualitative statements, a few survivors said that their communication with their husbands improved as a result of participating in the group, but among the group as a whole, there was no significant change in communication from preintervention to postintervention. It is likely that dyads who agreed to be in a group with others may have had fairly good communication and support prior to starting the group intervention; otherwise, the group setting and the disclosure that occurs could have been threatening. However, there were a few couples who reported marital discord, and they said that they benefitted from hearing how other couples managed relationship stress and balanced multiple family demands.

Overall, the magnitude of intervention effects obtained in this pilot effectiveness study was small to medium and similar to intervention effect sizes reported in 3 prior meta-analyses that examined intervention effects with patients and their family caregivers across multiple studies.2,41,42 The effect sizes we obtained when FOCUS was delivered to individual dyads at home were also small to medium.9–11 While it is difficult to compare effect sizes because of differences in design (ie, current study did not have a control group), sample characteristics, and timing of follow-up assessments, the previous FOCUS studies provide a context for the size of the effects (ie, small to medium), which we found in this study.

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Feasibility

We examined the feasibility of delivering the FOCUS Program at the CSC in regard to recruitment and retention, intervention fidelity, and satisfaction. Recruitment of dyads to the CSC study was challenging for a number of reasons. First, even though significant energy was expended to obtain referrals for the groups from nearby health systems, we obtained only a few referrals from them. Second, the majority of the participants were recruited from the pool of existing members at the local CSC, which serves approximately 500 people per year. It is possible that a CSC site with a larger membership (>1000 survivors) may have had fewer challenges in recruitment. Furthermore, a larger site would be able to form more homogeneous groups with regard to cancer type and stage of disease, which may be more appealing to potential participants. Third, it was difficult to identify a common time to offer the group intervention to dyads for 6 consecutive, weekly sessions. There were scheduling conflicts not only within a dyad but also across the 3 to 4 dyads necessary to form a group. Prior intervention studies with dyads also report that it is more difficult and time consuming to recruit survivor-caregiver dyads because 2 people rather than one need to be willing and available to participate in the study.43 Our enrollment rate of 60% was similar to the average enrollment rates (58%) reported in a prior meta-analysis of intervention studies with cancer survivors and their family caregivers.2

Despite the difficulty recruiting dyads, once they enrolled in the FOCUS Program at CSC, retention was high (92%) and higher than the mean retention rate (76%) reported in a systematic review of RCTs with cancer patients and their caregivers.42 Participants in this study considered the group intervention to be worthwhile and maintained their attendance, despite their busy schedules and the need to travel to group meetings for 6 consecutive weeks. The cohesiveness within groups and the support members experienced also may have influenced retention.

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INTERVENTION FIDELITY

The FOCUS protocol manual and intervention checklist was used to assess intervention fidelity for each 6-week intervention group and across all 12 intervention groups. Intervention fidelity was high, averaging 94% across groups. Although 1 social worker led most of the groups, a second social worker was also trained to lead the groups.

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SATISFACTION

Both survivors and caregivers reported high satisfaction with the program. The satisfaction scores obtained with FOCUS using the small-group delivery were similar to the satisfaction scores obtained previously when FOCUS was delivered to individual dyads at home.33,34 More specifically, on 5 items that measured satisfaction with core program content, the mean satisfaction score for dyads in the small-group intervention was 4.3, and in the home-delivered program with individual dyads, it was 4.4.33 There was no difference in the satisfaction scores reported by survivors and caregivers in the CSC study, consistent with previous findings.33 This suggests that the program content and delivery are acceptable to both cancer survivors and their family caregivers, whether delivered in a group format or to individual dyads.

Although dyads were very satisfied with the delivery of the group intervention, it would have been ideal to form more homogeneous groups of survivors facing the same type or stage of cancer, but the available pool of dyads referred to the study, as well as the challenge of finding a common time to deliver the group intervention, made it difficult to form homogeneous groups. Moreover, because CSC’s philosophy is to offer programs that are inclusive in nature (ie, enabling participants with different types and stages of cancer to attend), heterogeneous intervention groups were formed, consistent with the delivery of other CSC programs. However, there were several women referred to the study with breast cancer who were married and had small children. We were able to form a few intervention groups with these women and their husbands and found that these groups were very cohesive. At the end of the program, these women shared phone numbers with one another and planned to continue meeting informally, suggesting that group interventions with participants with the same type of cancer and survivor-spouse relationships were effective in building cohesiveness and support.

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Limitations

Although some positive intervention effects were found for dyads who participated in the CSC program from preintervention to postintervention, without a control group, outside factors could have influenced study results. Differences also may have existed between dyads who participated and those who declined participation, limiting generalizability of the findings. In addition, most dyads were white, well educated, and generally from higher socioeconomic groups. Currently, we are implementing the program in 2 larger CSC sites with more racial diversity.

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Conclusions

Based on the positive intervention effects and high satisfaction scores obtained, we believe that it is feasible to implement the FOCUS Program in a community site, such as a CSC affiliate, using a small-group format with delivery by agency staff. Consistent with our implementation model (Figure 2), there was an excellent fit between the characteristics of the FOCUS Program and the agency where the program was implemented. Future studies are needed that use larger CSC sites with more diversity and non-English speakers, and studies that assess program costs are also needed. This information is necessary to measure program scalability, increase generalizability, and determine the resources needed to maintain this program as a line item in agency budgets.

Findings from this study have important implications for practice. It is essential that nurses and other health professionals advocate for evidence-based programs such as FOCUS in their own practice settings (eg, ambulatory clinics) to address the unmet needs of survivors and their family caregivers, as identified in reports from the Institute of Medicine7,44 and the National Alliance of Family Caregiving.45 The FOCUS Program, delivered by nurses and social workers, meets the National Coalition for Cancer Network guidelines for high-quality survivorship care in oncology.25 In addition, because nurses have expertise in symptom management, they need to form partnerships with community agencies and help deliver programs that address symptom management and improve QOL. At a minimum, our findings underscore the importance of assessing survivors’ and caregivers’ needs for information and support and helping them find resources, such as FOCUS, that can have a positive effect on their QOL.

In summary, FOCUS was implemented at a CSC affiliate by agency staff and had positive effects on survivors’ and their caregivers’ (dyads) outcomes. To address the needs of the growing number of cancer survivors and their family caregivers, more clinician-researcher collaboration is needed to implement evidence-based programs for them in practice settings.

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ACKNOWLEDGMENT

The authors thank Daniela Wittmann, PhD, MSW, from the University of Michigan for her valuable assistance in recruiting potential participants to the program.

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References

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Keywords:

Benefits of illness; Cancer survivors; Caregivers; Effectiveness study; Evidence-based program; Implementation and dissemination; Intervention study; Quality of life; Self-efficacy

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