Abstract
Background:
Advanced cancer affects the emotional and physical well-being of both patients and family caregivers in profound ways and is experienced both dyadically and individually. Dyadic interventions address the concerns of both members of the dyad. A critical gap exists in advanced cancer research, which is a failure of goals research and dyadic research to fully account for the reciprocal and synergistic effects of patients’ and caregivers’ individual perspectives, and those they share.
Aim:
We describe the feasibility and acceptability of the Me in We dyadic intervention, which is aimed at facilitating communication and goals-sharing among caregiver and patient dyads while integrating family context and individual/shared perspectives.
Design:
Pilot study of a participant-generated goals communication intervention, guided by multiple goals theory, with 13 patient-caregiver dyads over two sessions.
Setting/participants:
Patients with advanced cancer and their self-identified family caregivers were recruited from an academic cancer center. Dyads did not have to live together, but both had to consent to participate and all participants had to speak and read English and be at least 18 years or age.
Results:
Of those approached, 54.8% dyads agreed to participate and completed both sessions. Participants generated and openly discussed their personal and shared goals and experienced positive emotions during the sessions.
Conclusions:
This intervention showed feasibility and acceptability using participant-generated goals as personalized points of communication for advanced cancer dyads. This model shows promise as a communication intervention for dyads in discussing and working towards individual and shared goals when facing life-limiting or end-of-life cancer.
Keywords: Feasibility studies, pilot study, family caregiver, psychosocial oncology, communication research
Introduction
Patients with advanced cancer often face complex outpatient care regimens and frequent oncology appointments, leaving family caregivers increasingly responsible for patient care with little support from the health care system.1,2 This takes a toll on caregivers’ emotional and physical health, affecting patients as well.3–7 As a result, little time is left for patients and caregivers to develop, communicate, and renegotiate on an ongoing basis the goals they want to achieve, separately and together. Yet, communication is at the heart of the family cancer experience,8,9 and more effective patient-caregiver communication is linked to better physical and emotional well-being,10–12 reduced caregiver burden,13–16 and enhanced caregiver bereavement adjustment.17 While most caregivers and patients desire open communication to support each other and establish shared goals,18,19 they frequently do not understand each other’s wishes and may be reluctant to openly discuss the impact of cancer on themselves and their relationship without prompting.20–23 Discussing broader plans and goals can be a way to begin the self-disclosure process and can support connection, clarify values, enhance coping, and help to prioritize meaningful activities. Most research on goals in advanced cancer to date has focused on whether caregivers are accurate in their knowledge and understanding of patients’ treatment choices and eventual end-of-life wishes.22–25 This unidirectional and limited focus ignores reciprocal influences within the family context surrounding plans beyond patient treatment.26,27 Discussing personal and shared goals at end of life has been shown to enhance relationship satisfaction,28 and providing social support often results in emotional and physical health benefits for the support provider.29
The Me in We intervention was developed to foster dyadic coping through ongoing communication between cancer patients and their caregivers, and is informed by multiple goals theory30 within the context of life-limiting illness.28 Multiple goals theory assumes that interpersonal communication can support multiple goals including personal or identity goals, promoting agency and autonomy, and shared goals, supporting and maintaining relationships.31 The format of Me in We is based on the commonly used marital interaction paradigm.32,33 In this paradigm, dyad members list specific topics for discussion and engage in a brief, minimally-prompted, timed discussion. In this intervention, participants are asked to list and discuss personal and shared goals, resulting in a respondent-generated, personalized instrument. Reciprocal dyadic communication is likely an important pathway by which Me in We impacts patient and caregiver emotional well-being and relationship satisfaction.
The goal of this pilot study was to describe the feasibility and acceptability of the Me in We intervention. This intervention was designed to address a critical gap in advanced cancer research: the failure of goals research and dyadic research to fully account for the reciprocal and synergistic effects of patients’ and caregivers’ individual perspectives, and the perspectives they share about the future.
Methods
Study population and recruitment
Thirteen cancer patient-caregiver dyads (N = 26) were recruited from an academic cancer center. Patients were eligible if they had advanced cancer (stage III-IV cancer or stage IV breast cancer), and if they identified a family caregiver who agree to participate. Both patient and caregiver had to be English speaking/writing and ≥18 years old. We also excluded patients who had a palliative care consultation in the last 30 days. This was done because during study preparation, patients with recent palliative care consults reported having discussed their goals (further documented in the electronic health record of having had a goals of care conversation). While the Me in We intervention was designed to provide a more dyadically-oriented exchange than a standard goals of care conversation,34 we chose for this first stage of testing to engage dyads in which the patient was unlikely to have had formally discussed their personal or shared goals.
A research assistant (RA) met with potential participants in the clinic waiting room or during infusion therapy and explained the study. Interested patients identified a caregiver—the person most involved with their health care who provides help/support. The caregiver and patient did not need to live together; however, both had to attend an upcoming appointment and provide written informed consent to participate. The study was approved by the University of Utah Institutional Review Board (#00107227).
Intervention procedure
Me in We, which expands upon previous work,35 was delivered in two sessions which took place immediately before/during patient clinic appointments, spaced approximately 1 month apart. After consent, participating dyads independently completed demographic questionnaires, then independently listed goals in two domains: (1) two Self Goals (Identity) they would like to complete individually (to promote personal agency); and (2) two Shared Goals (Relational) they would like to accomplish together (to promote dyadic coping). Example goals were provided. To ensure variability in goals (i.e. beyond “cure the cancer”), participants were instructed to list no more than one goal related to cancer treatment.
Following the goal list, the RA instructed the dyad to discuss their goals with each other for 10 min and then left the room. A video camera recorded the discussion. After 10 min, the RA returned and asked participants to independently complete post-discussion questionnaires. This entire procedure was repeated at the second session.
Measures
The primary focus of this study was feasibility, operationalized as enrollment and retention rates, and acceptability, measured by participant ratings of the discussion. Likert-type items on a scale of 1 (not at all) to 9 (very much) were used for post-session ratings: 10 items assessed the discussion (e.g. benefit, satisfaction, realism, relevance) and 9 items assessed participant feelings during the discussion (e.g. upset, frustrated, in control).28 Two items assessed potential effects of recording on behavior during the discussion.36 All items are presented in Table 1. Finally, we asked open-ended questions about suggestions for improvement and how discussions changed across the two sessions.
Table 1.
Participant post-discussion assessments.
| During the discussion… | Session 1 (N = 13) |
Session 2 (N = 13) |
||
|---|---|---|---|---|
| Patient |
Caregiver |
Patient |
Caregiver |
|
| Mean (SD) | Mean (SD) | Mean (SD) | Mean (SD) | |
| I was surprised by the goals chosen by my friend/family member | 1.23 (0.599) | 1.38 (0.650) | 1.46 (0.776) | 1.46 (0.877) |
| My friend/family member was surprised by the goals I chose | 1.31 (0.751) | 1.50 (1.243)* | 1.62 (0.870) | 1.31 (0.630) |
| What was your highest level of distress? | 1.85 (1.281) | 2.15 (2.267) | 1.38 (.870) | 1.23 (.599) |
| What was your friend/family member’s highest level of distress? | 2.08 (1.891) | 2.62 (2.631) | 1.62 (1.387) | 1.00 (0.000) |
| Did you learn new information in your discussion? | 4.54 (2.665) | 4.92 (2.644)* | 4.69 (2.250) | 4.50 (2.431)* |
| How much do you feel you benefitted from having this discussion? | 7.31 (1.974) | 6.54 (2.106) | 7.00 (1.354) | 7.08 (2.253) |
| How much did you enjoy the format of this conversation? | 7.46 (2.222) | 7.08 (2.216) | 8.00 (.913) | 7.23 (1.787) |
| How similar was this discussion to how you normally talk? | 7.69 (2.097) | 7.77 (1.641) | 7.62 (1.325) | 7.92 (1.115) |
| How relevant was this discussion to your life? | 8.42 (.669 )* | 8.15 (1.345) | 8.08 (.954) | 7.92 (1.553) |
| How satisfied do you think your friend/family member is with the outcome of your discussion? | 8.15 (1.772) | 8.54 (0.877) | 8.31 (0.751) | 8.08 (1.256) |
| I felt understood by my friend/family member | 8.46 (0.877) | 8.58 (0.793)* | 8.31 (0.480) | 7.77 (2.204) |
| Do you intend to take steps to help your meet your goals within the next month? | 7.77 (2.242) | 8.62 (0.650) | 8.17 (0.937) | 8.69 (0.630) |
| How satisfied are you with the outcome of your discussion? | 8.31 (1.316) | 8.46 (1.198) | 8.31 (0.751) | 8.25 (0.866)* |
| My friend/family member felt understood by me | 8.69 (0.480) | 8.62 (0.768) | 8.15 (0.801) | 8.54 (0.776) |
| Do you intend to take steps to help your friend/family member meet their goals within the next month? | 8.50 (0.905)* | 8.62 (0.768) | 8.15 (0.899) | 8.85 (0.376) |
| During the discussion I felt… | ||||
| Upset | 1.00 (0.000) | 1.08 (0.277) | 1.08 (0.277) | 1.00 (0.000) |
| Frustrated | 1.15 (0.376) | 1.23 (0.439) | 1.15 (0.555) | 1.00 (0.000) |
| Stressed | 1.62 (0.961) | 1.31 (0.630) | 1.23 (0.439) | 1.31 (0.630) |
| Anxious | 1.54 (0.776) | 1.92 (1.188) | 1.23 (0.439) | 1.15 (.376) |
| Sad | 1.46 (1.198) | 1.46 (1.127) | 2.00 (2.273) | 1.69 (1.702) |
| Excited | 6.69 (2.097) | 5.85 (2.304) | 7.31 (1.316) | 5.62 (2.219) |
| Alert | 7.15 (2.672) | 6.00 (3.109) | 7.15 (2.267) | 6.46 (2.436) |
| Interested | 7.15 (1.994) | 7.46 (1.391) | 7.77 (1.301) | 6.92 (1.240)* |
| In Control | 7.15 (2.035) | 7.69 (1.601) | 7.92 (1.188) | 7.46 (1.664) |
| Impact of recording | ||||
| To what extent were you aware of the recorder? | 4.08 (2.465) | 5.23 (2.555) | 3.85 (2.410) | 4.77 (3.059) |
| To what extent did the recorder affect your behavior? | 2.85 (1.676) | 3.31 (2.529) | 2.23 (1.423) | 3.15 (2.340) |
Missing 1.
Data collection and analysis
Data were collected between March-June 2019. Descriptive statistics were used to summarize feasibility and acceptability for both sessions and ANOVA to compare sessions and role. Listed goals and opened-ended responses were reviewed and presented.
Results
Feasibility and acceptability
A total of 198 patients were initially screened and 29 were eligible; 16 (55.2%) declined participation, often due to time constraints or having participated in another study. Thirteen patients and their caregivers participated. See Table 2 for demographics. All participants were retained throughout the study, and all participants completed a goal list at each session.
Table 2.
Participant characteristics.
| n | % | |
|---|---|---|
| Gender | ||
| Male | 10 | 38.5 |
| Female | 16 | 61.5 |
| Race | ||
| White/Caucasian | 25 | 96.2 |
| Two or more | 1 | 3.8 |
| Sexuality | ||
| Heterosexual/straight | 24 | 92.3 |
| Bisexual | 1 | 3.8 |
| Lesbian or Gay | 1 | 3.8 |
| Education | ||
| High school graduate or equivalent | 3 | 11.5 |
| Some college or vocational school | 5 | 19.2 |
| College graduate (4 years) | 8 | 30.8 |
| Some graduate or professional school | 2 | 7.7 |
| Graduate or professional degree | 8 | 30.8 |
| Religious affiliation | ||
| Catholic | 1 | 3.8 |
| Protestant | 1 | 3.8 |
| Other | 11 | 42.3 |
| No religious affiliation | 13 | 50 |
| Total annual household income | ||
| $25,000–$39,999 | 2 | 7.7 |
| $50,000–$74,999 | 5 | 19.2 |
| $75,000 or more | 19 | 73.1 |
Overall, patients and caregivers reported low levels of distress during the discussion for self (M = 1.65, SD = 1.413) and perceived partner distress (M = 1.83, SD = 1.812) and high satisfaction (M = 8.33, SD = 1.033) across both sessions. They reported high levels of feeling understood by their family member (M = 8.50, SD = 0.728) and intention to help their friend/family member with goals in the next month was also highly rated (M = 8.53, SD = 0.784). Participants reported that the recorder did not impact their behavior. Patient and caregiver individual ratings of the intervention are presented in Table 1.
Participants reported feeling significantly more understood in the first session vs. the second session (F1,8 = 10, p = .013). There were no other significant differences across time for discussion characteristics or emotions. Patient and caregiver ratings of discussion characteristics did not significantly differ from each other. There was a significant effect of role (patient vs. caregiver) on some emotional variables during the discussions: patients felt more anxious (F1,8 = 6.4, p = .035), caregivers felt less alert (F1,8 = 6.667, p = .033) and more in control (F1,8 = 10.028, p = .028).
Description of goals and open-ended responses
Participants’ goals are shown in Table 3. Most participants (n = 15) indicated in interviews that their discussions did not change much, or were very similar, between the two sessions. Participants also reported that having discussions near clinic appointments was convenient and not burdensome.
Table 3.
Description of participant self-goals and partner goals.
| ID* | Self-Goal 1 | Self-Goal 2 | Partner Goal 1 | Partner Goal 2 |
|---|---|---|---|---|
| B008-CG-T1 | Exercise more | Spend more time with grandkids | Plan camping trip | Build a puzzle table |
| B008-PT-T1 | Lose 10 pounds | Complete area in the basement | Celebration dinner with friends | Set an exercise goal (2×/week) with [CG] |
| B008-CG-T2 | Exercise | Eat better | Take walks together | Plan dinner menus |
| B008-PT-T2 | Lose 10 pounds | Change room in basement | Clean the side by side and get ready to sell | Take trip to see [friend] |
| B009-CG-T1 | Gym 3 times per week | Get into nursing school | Move into a new house | Buy new bed frame |
| B009-PT-T1 | Better workout routine | Meal planning | Save for new home | Weekly date nights |
| B009-CG-T2 | Workout consistently | Get into nursing school | Save money for home improvements | Take a vacation to [place] |
| B009-PT-T2 | Better workout routine | Meal planning | Budgeting | Plan trip to [place] |
| B010-CG-T1 | Eating healthy | Start exercising | Plan a trip to [place] | Go to the movies |
| B010-PT-T1 | Walk a mile | Work on videos | Go to movies | Do Dutch oven Dinner |
| B010-CG-T2 | Work in the yard | Walk on treadmill | Make plans for Mother’s Day | Plan trip to [place] |
| B010-PT-T2 | Keep walking | “De-junk” house | Plan trip to [place] | Go to the movies |
| B011-CG-T1 | Work on physical fitness | Spend less time at home | Work on [friend’s] overall health | Plan travel |
| B011-PT-T1 | Walk 20 minute each day | Eat healthy meals | Plan trip | Spring cleaning |
| B011-CG-T2 | Recreation multiple times each week | Read more | Travel | Work on physical fitness |
| B011-PT-T2 | Strength training | Balance vacation and work | Plan trip to [place] | Enjoy ourselves on trip |
| B012-CG-T1 | Work out every day | Visit aunt | Plan our move | Plan a vacation |
| B012-PT-T1 | Walk every day | Light weights every other day | Pack the apartment | Move to [place] |
| B012-CG-T2 | Go to gym daily | Get finances sorted | Successfully move | Travel home to see family |
| B012-PT-T2 | Stick to workouts | Change nephrostomy bag to stint | Successful move | Explore new neighborhood |
| B013-CG-T1 | Exercise 3×/week | Eat more veggies | Setting up the garden | |
| B013-PT-T1 | Plant garden | Ride bike at least once/week | Plan [location] trip | Throw party for family/friends |
| B013-CG-T2 | Less stressed at work | Exercise more | Have a good time in [location] | Plan trip to [location] |
| B013-PT-T2 | Walk [name] every day | Meet up with new friends | ?? | Work on garden together |
| B014-CG-T1 | Exercise 5 days a week | Lose 15 pounds | Plan activities when friends come to visit | Summer vacation for a weekend |
| B014-PT-T1 | Make it through next 2 chemos | Get up and walk more | “make plans and arrangements” | Do something for good friends |
| B014-CG-T2 | Exercise | “Read out of a good book daily” | Plan family reunion | Travel/plan staycation in [location] |
| B014-PT-T2 | Increase time walking each day | Duolingo/Spanish with sons | Plan family reunion | Go to museum as a family |
| B015-CG-T1 | Fix trailer for side-by-side | Fix steps/deck | Have more dates nights | More side-by-side rides |
| B015-PT-T1 | Finish blanket | Walk to get mail once/week | Have a barbeque with people | More side-by-side rides |
| B015-CG-T2 | Working out/lose weight | Work on deck | Do yardwork together/flower bed | Going camping |
| B015-PT-T2 | Get office cleaned up | Walk to mailbox | Camping/walking | Shooting rifles |
| B016-CG-T1 | Spend time with friend | Going for a walk with family (2× a week) | “Be in the garden and working on our yard at least once a week” | Plan a short trip for wedding anniversary |
| B016-PT-T1 | Work out consistently | “Getting my greens in every day” (smoothies, veggies, etc.) | “Get out and hike at least once a week in nature” | Go to [location] to see [location] and other sites |
| B016-CG-T2 | Work out at least 3× per week | Playing with the cats everyday | Do something fun for anniversary | Hot yoga twice a week (as long as no infusion that week) |
| B016-PT-T2 | Eat greens daily | Working out | Go to the [location] | Have dinner with friends or family once a week |
| B017-CG-T1 | Prepare to run races | Wedding prep for daughter | Help each other clean | Work on personal histories |
| B017-PT-T1 | Exercise 30 minute daily | Take a trip to visit family | Go for a bike ride | Write childhood memories |
| B017-CG-T2 | Exercise daily | Organize house | Go on bike rides | Work on personal histories |
| B017-PT-T2 | Cut back on sugar | Walk 30 minute daily | Go on a bike ride | Have lunch together |
| B018-CG-T1 | Communicate better | Read more frequently | Next steps in fertility/conception | Find more ways to be intimate |
| B018-PT-T1 | Start going to gym again | Work on creative things | Find surrogate | Go on trips |
| B018-CG-T2 | Find better balance in life | Focus on thoughtfulness and wellness | Have more meaningful conversations | Train for athletic event together |
| B018-PT-T2 | Workout regularly | Get new job | Go on a trip | Make dinners together |
| B019-CG-T1 | Lose weight | Get caught up with work, “get back into normal groove of life” | Camping/fishing | Trip to [location] |
| B019-PT-T1 | Spend more time outside, health (hiking, backpacking, mountain biking) | Spend more time with CG | Spend more time hiking/being outside | Living in same state [as caregiver] so getting job at nearby forest |
| B019-CG-T2 | Continue fitness goals | Get caught up on work | Get in the same house | Go to a hot spring |
| B019-PT-T2 | Exercise more | Travel more | Travel more | Put away cell phones and enjoy each other more |
PT: Patient; CG: Caregiver; T1: Session 1; T2: Session 2.
Discussion
The use of respondent-generated and personalized instruments is under-explored in both advanced cancer and dyadic research but is not unprecedented.37–39 This intervention allowed participants to identify and define meaningful goals, thus providing critical information about their plans for the future. Translating these advantages into an intervention is innovative, highlighting the potential for positive effects of open communication and joint problem solving on relationship functioning.40,41 Participants indicated that the intervention was not distressing, was relevant, and that they wanted to take steps to meet goals that were discussed.
Although researchers are still unsure of the exact processes that are beneficial for communication (e.g. how often, about what) between cancer patients and caregivers,42 this intervention shows promise for promoting communication and the pursuit/completion of individual and shared goals when life is limited. This goals pilot provides a feasible and acceptable cue which encourages dyads to speak about their own goals and shared goals, integrating the context of family, advanced cancer, and goal setting to provide a space for open communication to occur to ultimately enhance relationship satisfaction and promote emotional health. This work aligns with advance care planning discussions, the goal of which is to elicit patient values and preferences,43 and extends the concept further to include potential key personal milestones as well as invites caregivers to talk about their goals. Future research could investigate whether helping patients and caregivers identify achievable goals improves personal and dyadic well-being. As a scalable and dynamic intervention that is both feasible and acceptable, clinicians could include aspects of the intervention with goals of care conversations to provide a more holistic view of patient- and family-centered care during advanced cancer.
What is already known about the topic?
Communication is integral to the family cancer experience.
Discussing personal and shared goals at end of life may enhance relationship satisfaction.
Caregivers and patients desire open communication, but often do not understand the other’s wishes or are reluctant to openly discuss cancer’s impacts.
What this paper adds
As the theoretical basis for this intervention, multiple goals theory provides guidance for advanced cancer couples to communicate about individual and shared goals.
This pilot study establishes a feasible and acceptable model for a reciprocal and synergistic communication-centered dyadic intervention for patients and caregivers dealing with advanced cancer.
Implications for practice, theory or policy
Respondent-generated goals produced comfortable and realistic communication that was acceptable to participants.
Clinicians could adapt or include aspects of the intervention with goals of care conversations or advanced care planning to provide a more holistic approach to patient- and family-centered care.
Acknowledgments
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by University of Utah College of Nursing Dick and Timmy Burton Pilot Grant (PI: Ellington) and the National Cancer Institute (5T32CA090314–16; MPI Brandon/Vadaparampil).
Footnotes
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
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