“In Eight Minutes We Talked More About Our Goals, Relationship, Than We Have in Years”: A Pilot of Patient–Caregiver Discussions in a Neuro-Oncology Clinic

Abstract

Primary brain cancer is a diagnosis that can have drastic health impacts on patient and caregiver alike. In high-stress situations, dyadic coping can improve psychosocial and health outcomes and communication about personal life goals maybe one way to facilitate this coping. In this study, we describe the feasibility and accessibility of a one-time, self-directed goal discussion pilot intervention for neuro-oncology patients and their primary caregivers. Ten dyads were taken to a private room to complete a pre-discussion questionnaire, a worksheet to elicit personal goals, complete an 8-min discussion of goals, a post-discussion questionnaire, and provided open-ended feedback about the process. Post-discussion, dyads reported that the intervention was not stressful. In open-ended feedback, dyads overwhelmingly reported that the intervention was a positive experience, providing a safe, calm environment to have difficult conversations. This intervention provides a positive framework for improving communication and discussion of goals between patient–caregiver dyads.

Primary brain cancer can be a devastating disease that impacts aspects of a patient’s physical, emotional, and behavioral health. Patients may experience significant physical debilitation, seizures, neurological decline, and personality changes (Schubart et al., 2008; Sherwood et al., 2006) with only 33.2% of people surviving after 5 years (based on 2008–2014 data) (National Cancer Institute, 2018). This forbidding prospect is matched by the distressing toll this disease can have on caregivers. Unsurprisingly, given these demands, many caregivers report feeling underprepared and overwhelmed (Schubart et al., 2008) with high levels of anxiety and fear (Hricik et al., 2011), which can adversely impact a caregiver’s quality of life and psychosocial health (Burns et al., 2013; Robison et al., 2009). Despite the toll of brain cancer on both patient and caregiver, interventions for patient and caregiver dyads dealing with cancer have primarily focused on breast and prostate cancer populations (Badr & Krebs, 2013). Patient–caregiver dyadic interventions have shown small but beneficial effects in improving quality of life (Badr & Krebs, 2013) and dyads especially benefit when viewed as a unit of care (Northouse et al., 2013). In addition, when clinicians understand and respond to the needs of caregivers, outcomes for both patients and their caregivers can improve (Meeker et al., 2011; Northouse et al., 2007).

Dyadic coping is a multidimensional concept of how partners interact to deal with stressors, which can be assessed by looking at both positive and negative factors like supportive communication, empathy, collaboration, protective buffering, or uninvolvement (Badr & Acitelli, 2017; Falconier et al., 2015). Given situations of high stress, such as advanced cancer or chronic illness, dyadic coping is a strategy often used by patients and caregivers in an attempt to reduce stress (Traa et al., 2015). Such positive coping strategies are linked to improved psychosocial and health outcomes (Traa et al., 2015), including improved relationship satisfaction (Falconier et al., 2015), better quality of life (Song et al., 2016), and reduced systemic inflammation (Gouin et al., 2016). A great deal of research using the social-cognitive processing model suggests that supportive social environments should enhance cognitive processing by allowing discussion of thoughts and feelings (Lepore, 2001). While cognitive and emotional processing can be intrapersonal tasks, inviting interpersonal processing can facilitate empathy and social support and lead to more personal growth (Gross & John, 2003; Zaki & Williams, 2013). For example, research has shown more effective interpersonal communication is linked to better physical and emotional well-being (Manne et al., 2006; Northouse et al., 2007; Porter et al., 2005), reduced caregiver burden (Badr et al., 2013; Lobchuk & Degner, 2002; Manne et al., 2010; Siminoff et al., 2010), and enhanced caregiver bereavement adjustment (Schuler et al., 2014).

While most caregiver–patient dyads wish for open communication (Lim & Zebrack, 2006; Mols et al., 2007) and despite the overwhelming benefits of positive social support and communication, patients and caregivers often engage in protective buffering (Hagedoorn et al., 2000) by hiding their worries, denying their concerns, or acquiescing to their partner to avoid disagreement (Manne et al., 2007). In addition, communication between dyads about cancer-related issues specifically has been shown to decrease over time (Song et al., 2012). Perhaps as a result, dyads frequently do not understand each other’s wishes and may be reluctant to openly discuss the impact of cancer on themselves and their relationship (Fried et al., 2003; Northouse, 2012; Parks et al., 2011; Tang et al., 2005). While one partner may be attempting to minimize stress for the other partner, protective buffering has numerous documented adverse psychosocial outcomes including decreased satisfaction with the relationship and poorer mental health (Langer et al., 2007, 2009). In addition, dyad conflict and/or avoidance can impair joint decision making, leading to unwanted, aggressive, life-prolonging measures (Francis et al., 2010; Parks et al., 2011; Winter & Parks, 2008). One way to improve communication is through goal setting, which can lead to feelings of ease, connectedness, cooperation, and responsiveness (Canevello & Crocker, 2017; Crocker et al., 2010).

A major gap exists in advanced cancer research on caregiver–patient communication about goals, however. And yet over the cancer continuum both patients and caregivers must re-evaluate personal and shared goals and plans. To date, research has focused on ensuring that caregivers know patients’ wants and needs and is typically focused on the patients’ treatment goals. While this is important, it is also recognized that cancer is a family disease with influences on both caregivers (CGs) and patients (PTs; Northouse et al., 2006). Evidence indicates that supporting others’ personal and shared goals during cancer care can improve relationship satisfaction and lead to improved well-being and quality of life for both CGs and PTs (Scott & Caughlin, 2014; Van Scoy et al., 2017).

Several interventions exist to improve communication strategies and processes, but these often do not provide participants a safe opportunity to initiate these discussions. Naturalistic research on spouses coping with advanced cancer suggests that while there is high variability in the amount of talk couples engage in at home, the majority of couples do not mention their relationship at all, and most discuss cancer less than 2 minutes over the course of the day (Reblin et al., 2019). Oncology providers, who often could play a role in facilitating these conversations during clinic visits, have limited time and often fail to recognize dyadic goals or conflict, thus missing an opportunity to assist in improving dyad adjustment to life-limiting cancer (Siminoff et al., 2012).

The goal of this pilot study was to assess feasibility of the project through participant feedback on a short caregiver–patient dyad, self-directed goal discussions in a neuro-oncology clinic setting. First, we were interested in whether we could recruit dyads to participate, and second, whether they would be able/willing to share and discuss their goals. We also gathered data on how much dyads liked the intervention and whether they found it helpful through questionnaire responses and open-ended interview feedback.

Method

Study Participants and Recruitment

Participants were dyads recruited from a neuro-oncology clinic at a National Cancer Institute (NCI)-Designated Comprehensive Cancer Center from November 2017 to March 2018. An NCI designation signifies a commitment to scientific excellence as well as substantial education, training, and community activities. Patients had a primary brain cancer diagnosis and were undergoing active treatment; other inclusion criteria were a score of 70 or more on the Karnofsky Performance Status (KPS) scale and no severe cognitive impairments. The KPS index classifies patients based on their functional impairment. The lower the score, the worse survival will be for more diseases. For example, if a patient has a score of 80 to 100, they are classified as being able to carry on normal activities and work; a score of 70 indicates that the patient can care for themselves, but is unable to carry on normal activity or do active work (Péus et al., 2013). KPS scores were used because they are easily available within the electronic medical record and are a proxy for a patient’s functional ability to complete tasks. Caregivers were self-identified as being responsible for most of the patient care. Patient and caregiver participants were over 18 years old and were English-speaking and understanding; both were required to consent to participate. Informed consent was obtained from all individual participants included in the study.

Potential patient participants were identified through clinic schedules. Patients and caregivers were approached by the researcher in clinic during breaks in care (e.g., in the waiting room or between consultations with health care providers). The researcher confirmed inclusion criteria, explained the study, invited the participation of both patient and caregiver, and obtained written informed consent. Institutional Review Board (IRB) approval was granted through Chesapeake IRB (Pro00023101).

Intervention Procedure

Participation in study procedures occurred after the patient’s scheduled appointment with their oncologist. After the appointment, the dyad was taken to another room in the clinic where they completed the intervention. This room was a private consultation room within the neuro-oncology clinic. First, a short pre-discussion questionnaire was given to capture demographics. Dyads then completed a worksheet to elicit three personal goals they had for themselves, and three goals they thought their family member had, for the next month. At least one goal for themselves and their partner was not meant to be related to the patient’s health care (e.g., planning a trip, spending time with others, doing yoga). The reason we specifically requested that at least one goal not be health related is that given the context of the research—in a neuro-oncology clinic during/after an appointment, where cancer is likely front of mind—we wanted to emphasize that we were also interested in goals outside of their immediate health concerns. Participants were asked to list goals in order of importance. These goals were written privately, but the dyad was informed that the goals would be the basis for discussion, so they should be goals they were willing to discuss with their partner. Dyads had as much time as they needed to write down their goals, but most completed this task in 5 to 10 minutes. Next, after the goals were written down, the researcher directed the dyads to discuss their goals for 8 minutes without direct facilitation by the researcher. Prompts were provided beforehand to help guide their discussion, such as: (a) Explain the goals you chose and why you chose them; (b) What are your thoughts/feelings about the goals? (c) What might you do to achieve these goals together? (d) How are your goals/plans changing? The researcher then left the room with an audio-recorder running on the table to allow the dyad to discuss their goals. After 8 minutes had passed, the researcher came back into the room and the dyads completed a post-discussion rating questionnaire adapted from previous research (Holt-Lunstad et al., 2003). This questionnaire consisted of four items, including how stressful the conversation was, how similar it was to normal conversation, if any new information was discussed, and how much they felt they benefited from the discussion. These questions were rated on a scale of 1 (not at all) to 7 (a lot). In the case of strong emotional reactions to the discussion the neuro-oncology social worker was available for consultation.

Participants were asked to provide their feedback regarding the discussion task in a brief, semi-structured interview, which was also recorded. The interviewer (D.E.K.) has an anthropology background and is trained in interviewing. Participants were asked what they liked about the discussion task, what changes could be made to make it more helpful for others, and whether they had any other feedback. Dyads were compensated US$25 per person (US$50 per couple).

Descriptive statistics were used on demographic and questionnaire data. The written goals and open-ended feedback were analyzed by a study team member trained in qualitative methods (D.E.K.) using inductive coding to summarize general themes (Thomas, 2006) and matched between patient and caregiver. As detailed by Thomas (2006), inductive coding is an approach which allows frequent, dominant, or significant themes to emerge from raw data. Data were then reviewed and verified by the broader study team.

Results

Recruitment Rate

Our goal for this pilot study, which was achieved, was to enroll 10 dyads in the study. Because of the brevity of the protocol, we assessed the likelihood of same day participation. Nine dyads declined to participate, nine said they were interested but at a future appointment, and nine agreed to participate that day. The dyads who deferred indicated that they would like to participate but had prior obligations that they needed to attend to after the appointment in which they were approached (such as other appointments or long drives home). Reasons for refusal, when provided, were mostly due to time constraints of the patient and caregiver.

Demographics

Dyads were mostly White (n = 19, 95%), non-Hispanic (18, 90%), and spouses (16, 80%) with an average age of 57.9 (range = 32–80 years, SD = 12.7; Table 1). Four dyads had husbands as patients, four dyads had wives as patients, one dyad was a sister pair, and one was a mother/daughter pair. The dyads had been in a relationship for approximately 36.1 years (range = 19–56 years, SD = 14.9), and the majority of the caregivers were female (12, 60%). Overall, the group was highly educated, with at least 75% (n = 15) completing some college/vocational school or higher. The vast majority felt their financial needs were comfortable or more than adequate (17, 85%).

Table 1.

Dyad Demographics.

		Total (N = 20)		Caregiver (N = 10)		Patient (N = 10)
Variable		Freq	%	Freq	%	Freq	%
Sex	Male	8	40.0	4	40.0	4	40.0
	Female	12	60.0	6	60.0	6	60.0
Race	White	19	95.0	10	10.0	9	90.0
	American Indian	1	5.0	0	0.0	1	10.0
Hispanic/Latinx	Yes	2	10.0	2	20.0	0	0.0
Type of dyad relationship	Spouse	16	80.0
	Parent	1	5.0
	Sibling	2	10.0
	Child	1	5.0
Education	Less than high school	1	5.0	0	0.0	1	10.0
	High school or equivalent	4	20.0	1	10.0	3	30.0
	Some college or vocational school	7	35.0	3	30.0	4	40.0
	College graduate (4 years)	5	25.0	3	30.0	2	20.0
	Some graduate or professional school	2	10.0	2	20.0	0	0.0
	Graduate or professional degree	1	5.0	1	10.0	0	0.0
Religion	Catholic	4	20.0	2	20.0	2	20.0
	Protestant	7	35.0	4	40.0	3	30.0
	No religious affiliation	6	30.0	3	30.0	3	30.0
	Other	3	15.0	1	10.0	2	20.0
Financial	My financial situation is not very good	3	15.0	1	10.0	2	20.0
	My financial situation is comfortable	12	60.0	4	40.0	8	80.0
	My financial situation is more than adequate to meet my needs	5	25.0	5	50.0	0	0.0
Household Income	US$25,000–US$39,999	2	10.0
	US$40,000–US$49,999	1	5.0
	US$50,000–US$74,999	5	25.0
	US$75,000 or more	8	40.0
	Prefer not to answer	4	20.0
Employment	Not employed	12	60.0	4	40.0	8	80.0
	Part-time	1	5.0	1	10.0	0	0.0
	Full-time	7	35.0	5	50.0	2	20.0
How stressed have you felt in the past week?	Not at all stressed	2	10.0	1	10.0	1	10.0
	A little stressed	7	35.0	3	30.0	4	40.0
	Somewhat stressed	5	25.0	2	2.0	3	30.0
	Moderately stressed	3	15.0	1	1.0	2	20.0
	Very stressed	3	15.0	3	30.0	0	0.0
		N = 19		N = 10		N = 9
How satisfied are you with the support you’ve received from friends, family, etc. in the last week?	Not at all satisfied	1	5.3	0	0.0	1	11.1
	A little satisfied	1	5.3	0	0.0	1	11.1
	Somewhat satisfied	3	15.8	2	20.0	1	11.1
	Moderately satisfied	8	42.1	4	40.0	4	44.4
	Very satisfied	6	31.6	3	30.0	3	33.3
In general, would you say your health is:	Excellent	5	25.0	5	50.0	0	0.0
	Very good	9	45.0	4	40.0	5	5.0
	Good	2	10.0	1	10.0	1	1.0
	Fair	3	15.0	0	0.0	3	3.0
	Poor	1	5.0	0	0.0	1	1.0
		M	SD	M	SD	M	SD
	Age	57.9	12.7	59.5	11.2	56.3	14.5
	Length of relationship	36.1	14.9

Goals

Patients and caregivers were asked to list three goals that they had for themselves, and three goals they thought their partner would list (Table 2). Participants were asked to list at least one goal not related to cancer treatment. Only one participant, a male patient, had trouble completing the task and left multiple spaces blank. In addition to goals relevant to the patient’s trajectory for brain cancer (e.g., get back to driving, wean off meds), general themes emerged for both patient and caregiver about general health behaviors (e.g., losing weight/eating healthy), finances (e.g., get out of debt, prepare to retire), participating in social activities (e.g., visit friends, plan children’s weddings), travel or participate in hobbies (e.g., plan a trip, finish refurbishing car), and personal goals (e.g., be more patient).

Table 2.

Dyad Goals.

Dyad 1
Patient (Husband)				Caregiver (Wife)
Self Goal 1	Attend daughter’s senior basketball games	Other Goal 1	Do great at job (teaching)	Self Goal 1	Spend more quality time together	Other Goal 1	Loose (sic) weight
Self Goal 2	Get off medications	Other Goal 2	Deal with spouse	Self Goal 2	Eat healthier, healthier lifestyle	Other Goal 2	Get out of debt
Self Goal 3	Get back to work	Other Goal 3	Finances	Self Goal 3	Finances better	Other Goal 3	Go back to work
Dyad 2
Patient (Husband)				Caregiver (Wife)
Self Goal 1	Stay alive and kill the cancer	Other Goal 1	Leave Florida	Self Goal 1	Rid my pain [indicated she had back problems]	Other Goal 1	Less recurrence of cancer
Self Goal 2	Get out of Florida	Other Goal 2	Sale the house	Self Goal 2	Sell home and business	Other Goal 2	sell business and house
Self Goal 3	Find acres and build a new small house	Other Goal 3	Find acres and build house too	Self Goal 3	Get a small cabin deep in the woods paid off—LIVE LOVE STRESS FREE	Other Goal 3	Fish and hunt more
Dyad 6
Patient (Husband)				Caregiver (Wife)
Self Goal 1	Lose weight	Other Goal 1	Wedding planned	Self Goal 1	Eating healthier; working out more	Other Goal 1	Finish working on car
Self Goal 2	Finish my car	Other Goal 2	Coordinate visits with friends	Self Goal 2	Be more patient	Other Goal 2	Write wedding “speech”
Self Goal 3	Finish [individual’s] house	Other Goal 3	Wedding planned	Self Goal 3	Help plan wedding	Other Goal 3	Eating healthier, working out
Dyad 8
Patient (Husband)				Caregiver (Wife)
Self Goal 1	Weight lose	Other Goal 1	More time together	Self Goal 1	To make sure my family is always taken care of and has nothing to ever worry about	Other Goal 1	For me to not stress out so much
Self Goal 2	More family time	Other Goal 2	[blank]	Self Goal 2	Enjoy family time with kids and husband	Other Goal 2	For me to not be over protective
Self Goal 3	[blank]	Other Goal 3	[blank]	Self Goal 3	To not let stupid things bother me and take people so personally and as a attack on me	Other Goal 3	Spend quality time with husband only and he wants me to show more compassion toward sicknesses and appreciate him more
Dyad 3
Patient (Wife)				Caregiver (Husband)
Self Goal 1	Sewing	Other Goal 1	Retiring	Self Goal 1	Travel to [location]	Other Goal 1	Travel to [location]/Cruise
Self Goal 2	Driving	Other Goal 2	Travel	Self Goal 2	Cruise	Other Goal 2	Legal resolution
Self Goal 3	Travel	Other Goal 3	Maine	Self Goal 3	Bathroom remodel	Other Goal 3	Bathroom remodel
Dyad 4
Patient (Wife)				Caregiver (Husband)
Self Goal 1	Little pain	Other Goal 1	Trips	Self Goal 1	Sort out wife’s short future	Other Goal 1	Sort out end of life events and care
Self Goal 2	Continue cooking and cleaning	Other Goal 2	Healthy	Self Goal 2	Enjoy life	Other Goal 2	Update friends on status
Dyad 4
Patient (Wife)				Caregiver (Husband)
Self Goal 3	Short trips	Other Goal 3	Get through next 3–6 months	Self Goal 3	Trip to see friends in [location]	Other Goal 3	Enjoy end of life as best possible
Dyad 7
Patient (Wife)				Caregiver (Husband)
Self Goal 1	Brain injury gets better	Other Goal 1	Taking care of each other	Self Goal 1	To be more patient	Other Goal 1	To reduce her frustration by being more supportive
Self Goal 2	Improve reading/writing	Other Goal 2	Take care of home/animals	Self Goal 2	To live every day to the fullest	Other Goal 2	To understand and be patient with all the process
Self Goal 3	Drive a car	Other Goal 3	See my health improve	Self Goal 3	Streamline my life and balance work and home	Other Goal 3	Accept not everything she wants can be done right away
Dyad 9
Patient (Wife)				Caregiver (Husband)
Self Goal 1	To drive again	Other Goal 1	To not let me drive	Self Goal 1	Vacation	Other Goal 1	To drive
Self Goal 2	To take cruise	Other Goal 2	To take a cruise	Self Goal 2	Retire	Other Goal 2	Visit her dad
Self Goal 3	To wean down on my meds successfully	Other Goal 3	To wean down on my meds	Self Goal 3	Take care of wife	Other Goal 3	new clothes
Dyad 5
Patient (Sister)				Caregiver (Sister)
Self Goal 1	Get cancer in remission	Other Goal 1	Keep body and mind healthy	Self Goal 1	Take a trip home	Other Goal 1	Go back to work
Self Goal 2	Stay on top of finances	Other Goal 2	Take care of family	Self Goal 2	Be more social	Other Goal 2	Social
Self Goal 3	Help out family members	Other Goal 3	Still enjoy hobbies/activities	Self Goal 3	Take a short trip	Other Goal 3	More walks (exercise in general)
Dyad 10
Patient (Daughter)				Caregiver (Mother)
Self Goal 1	Start exercising again	Other Goal 1	Complete Zumba without difficulty	Self Goal 1	Get her healthy	Other Goal 1	Make it through the day
Self Goal 2	Finish wedding planning	Other Goal 2	Sell [location] Condo	Self Goal 2	Lose weight	Other Goal 2	Feel better
Self Goal 3	Lose 10 lbs for wedding	Other Goal 3	Pick out dress for wedding	Self Goal 3	Get through wedding	Other Goal 3	Wedding

Post-Discussion Questionnaire

On the post-discussion ratings (scaled from 1 “not at all” to 7 “extremely”), dyads reported overwhelmingly that the discussion was not stressful (M = 1.7, Table 3), the discussion was moderately similar to how they normally talked (M = 4.9), and they learned a moderate amount of new information (M = 3.8). Participants also indicated they benefited very much from having the discussion (M = 5.8). There were no significant differences in patient and caregiver ratings.

Table 3.

Dyad Assessment of Guided Discussion.^a

	Total		Caregiver		Patient
Assessment question	M	SD	M	SD	M	SD
How similar was this discussion to how you normally talk?	4.9	1.5	5.3	2.4	4.5	2.5
How stressful was this discussion?	1.7	2.4	1.7	1.2	1.8	1.7
How much new information did you learn in your discussion?	3.8	1.4	4.0	2.1	3.7	2.6
How much do you feel you benefited from this discussion?	5.8	2.3	5.9	1.5	5.7	1.8

^aResponses scaled from 1 (not at all) to 7 (a lot).

Caregiver–Patient Open-Ended Feedback:Themes

During open-ended feedback, participants overwhelmingly had positive things to say about the discussion task. Suggestions for improvement included having opportunities for structured discussions earlier in the care trajectory and offering these structured discussions more than once. Two major themes arose in participants’ responses to what they liked about the discussion task.

First, participants reported that the task provided an opportunity and forum to begin what they described as “difficult” conversations. The majority of the dyads in the open-ended interview spoke about how the discussion task allowed them a space to seriously converse about issues in their life that they otherwise did not have, because they found some of the goals difficult to discuss with their partner; the format was a good way to open communication about topics not typically discussed. For example, a wife/caregiver stated that the discussion “was good because we don’t talk about all this all the time. Only occasionally and when we’re stressed and wanna get out of here. So this was good to sit down and discuss it.” Other dyads mentioned that because they were provided a dedicated time to speak about issues, they were able to address issues that maybe got “shoved below the surface. This kind of discussion brings those things back up to where they should be” (husband/caregiver). This was reiterated when a husband/patient observed that, “In eight minutes we talked more about our … goals, relationship than we have in years.”

Second, the structure and the location encouraged couples to be on “good behavior,” as suggested by one dyad specifically. Dyads mentioned that being in a clinic talking about potentially difficult issues encouraged dyads to remain calm. For example, one wife/patient mentioned that the discussion time required that they “[h]ave to sit here and listen to each other, not just speak. Take the time to talk and to listen to each other.” Another wife/caregiver stated directly, “We didn’t yell at each other. For one time it didn’t turn into a big fight and that’s actually a big thing.” Another husband/patient echoed this sentiment: “I liked that she didn’t yell and get upset with me.” The wife/caregiver in this dyad responded that she had gotten frustrated that her husband/patient had written down two very similar goals, and at home if that had happened she would have taken a stronger tone than how she responded in clinic.

The opportunity to speak openly and honestly about issues that dyads don’t feel comfortable approaching at home with some emotional control may have led conversations to be more productive than they otherwise might have been. As one husband/patient stated,

She [wife/caregiver] felt like she could finally be honest with me, without me having some kind of reaction. By having a discussion in this room instead of at home, she could be honest with me … not that she’s dishonest, sometimes she feels like she don’t always need to tell me everything, because she don’t want to put that burden on me. But here she could.

Discussion

This study gathered participant feedback on a pilot aimed at implementing a short, self-directed goals-based intervention in a clinical setting. Given the lack of interventions aimed at caregiver–patient dyads communication, this pilot provides a much-needed framework for potential interventions to begin and facilitate communication between caregiver–patient dyads in high-stress situations such as advanced cancer and chronic illness care. Furthermore, given the excellent dyad feedback and low time and personnel investment by researchers/practitioners needed to distribute the intervention, this is a straightforward pilot that can be implemented in numerous settings with relative ease.

Despite research demonstrating barriers in recruiting advanced cancer dyads for research (Northouse et al., 2006; Ransom et al., 2006; Steinhauser et al., 2006), we tried a same day participation approach and achieved a 33% same day participation rate. Given the amount of time asked of participants (45–60 minutes) after a potentially already long day of appointments, and with no forewarning, it is surprising that we enrolled a third of those approach. In addition, nine dyads expressed interest but asked to participate at a future appointment, indicating that they wished to participate but had other obligations after the appointment that they could not miss or rearrange, and would like to be re-contacted at a future appointment. To address this for future interventions that require a significant investment of time after an appointment, researchers could inform potential participants a day or two before their appointments of the research study and requirements. This would allow patients and their caregivers to plan accordingly. While this is a potentially significant investment of time, the overwhelmingly positive feedback indicates the intervention’s usefulness to participants. After one dyad had completed the intervention, the husband/caregiver approached D.E.K. and told her that while he had been highly reluctant to participate in the intervention initially, he was incredibly happy that he had the conversation with his wife, and he wished all couples in the clinic would have access to the intervention (especially males/husbands).

All dyads, except for one male patient, had no difficulties listing three goals during the intervention. Goals can be viewed as future valued outcomes, and thus a desired outcome that is important or meaningful (Locke & Latham, 2006). As part of a close, interpersonal relationship, these goals were necessarily influenced by the dyad’s relationship and may have been primed because of it (Shah, 2003). As evidenced in Table 3, dyads were able to list a broad range of goals outside of the immediate reason for their medical visit and the process did not appear to cause undue stress or anxiety.

Feedback from dyads overwhelmingly made clear that the discussion tasks and environment encouraged open communication and the ability to disclose information safely with partners. Rather than hiding cancer-related thoughts and concerns, or other more general life thoughts and concerns which are aspects of protective buffering (Langer et al., 2009), open-ended feedback from dyads suggest that this intervention provided a safe way to begin difficult, open conversations. While some protective buffering may have still limited which goals were discussed or the depth of discussion for some dyads, feedback from participants suggests that this discussion task seems to have dissolved many communication barriers and provided an opportunity to present concerns or feelings they previously had not shared. This was evidenced by participant’s feedback that they spoke about things that their partners had previously not wanted to burden them with or had been “shoved below the surface.” Even though some dyads indicated that they discussed topic previously avoided, participants reported that the discussion task was not stressful and also provided new information. Although participants indicated that the discussion was moderately like their normal discussions, open-ended feedback suggested that a key difference was an increased willingness to listen and stay calm.

The nature of the overwhelmingly positive feedback by both the patient and caregiver suggests that prompted dyadic goals-based conversation are likely to provide a context that fosters dyadic coping and social-cognitive processing and thus, as an intervention, has promise for reducing distress. An individual’s goals are situated within a larger interpersonal system (Canevello & Crocker, 2017). Thus, when patients and caregivers are unknowingly working to achieve different and potentially incongruent goals it can become difficult for both to achieve success, leading to goal-incongruent care and patient or caregiver distress (Sanders et al., 2018). Conversely, when patients and caregivers are aware of and can help facilitate each other’s goals, there are more opportunities to share and collaborate; not only does this facilitate goal achievement, but can help with meaning-making and build feelings of connectedness, even in otherwise distressing contexts (Canevello & Crocker, 2017; Mosher et al., 2017).

Some of the most encouraging data came from the feedback session after the discussion. Dyads reported that the discussion time provided a good starting point to discuss issues that may have been repressed and represented a safe, honest, and calm environment. Indeed, multiple participants indicated that the context for discussion required they be kinder to each other and listen harder than they often do at home. This indicates that a positive social environment was attained which did not inhibit the disclosure of information, thus supporting positive social-cognitive processing (Lepore, 2001). This stands in direct contrast to other work which has found that dyads will sometimes consciously avoid talking about their cancer situation (Gray et al., 2000), especially when it comes to emotions like their worries and fears (Boehmer & Clark, 2001). Providing a safe place to discuss and engage with personal topics like self-goals and partner-goals is also important considering the majority of spouses coping with advanced cancer infrequently discuss key issues, such as cancer or their relationship, over the course of the day (Reblin et al., 2019). Providing a framework, prompts for sharing, and a safe, open environment allowed patients and caregivers to begin to discuss some of these issues.

Limitations

It is important to understand the impact of communication along the cancer continuum in a broader population of cancer patients and different types of caregivers. This study sample represents a fairly homogeneous population which may not be generalizable to wider populations. In addition, as levels of communication can change with social support or uncertainty (Song et al., 2012), a better understanding of the social context and the disease trajectory may also be important. As a pilot study, our primary focus was on feasibility and refining our approach. However, future studies can collect more data on outcomes, such as psychological and physical health, and mechanisms, such as avoidance and emotional processes, to better understand how encouraging discussion of goals and priorities at different points in the disease trajectory can impact quality of life for both the patient and the caregiver. Finally, as environment was obviously central in this intervention, it is important to explore how other spaces, such as dyad’s homes, might be used to encourage participation in interventions such as this one.

Conclusion

Communication between cancer caregiver–patient dyads is vitally important as more formal care is moved into the realm of informal caregivers (Institute of Medicine, 2015). However, dyads are in need of interventions to help facilitate effective communication about potentially difficult, or even mundane topics, to encourage positive emotional processing and improve psychosocial and health outcomes. Decreasing protective buffering has been shown to decrease negative psychosocial outcomes on both the individual and dyad levels (Langer et al., 2009; Manne et al., 2007) and is an important step to improve caregiver–patient relationships in the cancer context. Our team has piloted a preliminary intervention that both patients and caregivers appreciated and found helpful. With further development and testing, it could be used as a forum for providing a safe, structured format in which advanced cancer dyads could engage in meaningful discussions of their life goals. In conclusion, participant feedback indicates that this pilot shows promise in reducing protective buffering which may have positive longitudinal impacts on the caregiver–patient dyad. In improving this relationship, the overall psychosocial well-being of both patient and caregiver may be impacted, potentially improving the patient’s cancer outcomes and the caregiver’s quality of life.

Biographies

Author Biographies

Dana Ketcher, PhD, MPH, CPH, is an applied medical anthropologist andapplied postdoctoral fellowin the Department of Health Outcomes & Behavior at Moffitt Cancer Center in Tampa, Florida, USA. Her program of research focuses on using qualitative methods to understand human–health interactions. Her most recent work has focused on experiences of women undergoing genetic testing for hereditary cancer, as well as family caregiving in the neurooncology context. Recent publications include “Caring for a Spouse with Advanced Cancer: Similarities and Differences for Male and Female Caregivers” in Journal of Behavioral Medicine (2019, with R. Trettevik, S, T. Vadaparampil, R. E. Heyman, L. Ellington, & M. Reblin), and “Feasibility of Implementing an Electronic Social Support and Resource Visualization Tool for Caregivers in a Neuro-Oncology Clinic” in Supportive Care in Cancer (2018, with M. Reblin et al.).

Lee Ellington, PhD, is a professor in the College of Nursing at the University of Utah, Salt Lake City, USA, a licensed clinical psychologist, and holds the Robert S. and Beth M. Carter Endowed Chair. Her program of research focuses on the impact of interpersonal health communication on adjustment, decision-making, and health. For the past decade, her research has focused on interpersonal communication with family caregivers. She has 20 years of continuous funding from NIH and the American Cancer Society. Recent publications include “Communication among Cancer Patients, Caregivers, and Hospice Nurses: Content, Process and Change Over Time” in Patient Education and Counseling (2018, with M. F. Clayton, M. Reblin, G. Donaldson, & S. Latimer), and “Interdisciplinary Team Care and Hospice Team Provider Visit Patterns During the Last Week of Life” in Journal of Palliative Medicine (2016, with M. F. Clayton et al.).

Brian R. W. Baucom, PhD, is an assistant professor in the Department of Psychology at the University of Utah, Salt Lake City, USA. His research focuses on understanding how romantic partners’ thoughts, feelings, and behaviors during conflict are related to their individual well-being and to the health of their relationships. Another major focus of his research is the development of computational tools and statistical models for studying interpersonal interaction. Selected publications include “The Effect of Stress on Empathic Accuracy in Romantic Couples” in Journal of Family Psychology (2019, with A. O. Crenshaw & K. Leo), and “Greater Emotional Arousal Predicts Poorer Long-Term Memory of Communication Skills in Couples” in Behavior Research and Therapy (2012, with S. Weusthoff, D. C. Atkins, & K. Hahlweg).

Margaret F. Clayton, PhD, APRN, FAAN, is a professor in the College of Nursing, holds an adjunct professor position in the Department of Communication, and is an investigator in the Huntsman Cancer Institute at the University of Utah, Salt Lake City, Utah. Her research blends the disciplines of nursing and health communication, addressing communication processes, quality of life, and physical and emotional outcomes of patient–provider interactions among hospice nurses and caregivers of cancer patients at end of life. Recent publications include “Hospice Nurse Identification of Comfortable and Difficult Discussion Topics: Associations among Self-Perceived Communication Effectiveness, Nursing Stress, Life Events, and Burnout” in Patient Education and Counseling (2019, with E. Iacob, M. Reblin, & L. Ellington), and “Nursing Support of Home Hospice Caregivers on the Day of Cancer Patient Death” in Oncology Nursing Forum (2017, with J. Hulett, K. Kaur, M. Reblin, A. Wilson, & L. Ellington).

Maija Reblin, PhD, is a social and health psychologist and an assistant member in the Department of Health Outcomes & Behavior at Moffitt Cancer Center in Tampa, Florida (USA). Her program of research is focused on the social context of advanced cancer family caregivers. Recent publications include “Outcomes of an Electronic Social Network Intervention with Neuro-Oncology Patient Family Caregivers” in Journal of Neuro-Oncology (2018, with D. Ketcher et al.) and “Behind Closed Doors: How Advanced Cancer Couples Communicate at Home” in Journal of Psychosocial Oncology (2019, with S. K. Sutton, S. T. Vadaparampil, R. E. Heyman, & L. Ellington).