Seminars in Oncology Nursing 35 (2019) 337 341

Contents lists available at ScienceDirect

Seminars in Oncology Nursing

journal homepage: https://www.journals.elsevier.com/seminars-in-oncology-nursing

Dyadic Interventions for Cancer Survivors and Caregivers: State of the

Science and New Directions
Hoda Badr, PhD*, Jafar Bakhshaie, MD, PhD, Karishma Chhabria, PhD
Department of Medicine, Baylor College of Medicine, Houston, TX

A R T I C L E I N F O Objectives: To describe caregiving and relationship challenges in cancer and the state of the science of dyadic
interventions that target survivors and caregivers.
Key Words: Data Sources: Narrative review.
survivors Conclusion: Viewing the survivor-caregiver dyad as the unit of care may improve multiple aspects of survivor
caregivers and caregiver quality of life. However, several questions remain regarding how, why, and for whom dyadic
dyadic interventions interventions are effective.
psychological distress Implications for Nursing Practice: Nurses should consider survivor, caregiver, and relationship needs when
quality of life
formulating supportive care protocols. Screening for survivor distress and extending distress screening to
couples
caregivers is an important first step in providing comprehensive psychosocial care.
© 2019 Elsevier Inc. All rights reserved.

A cancer survivor is a person diagnosed with cancer, current or time and energy for an extended period of time, and requires the per-
past, who is still living.1 Thanks to an aging population and improve- formance of tasks that may be physically, emotionally, socially, or
ments in cancer screening, detection, and treatment, the number of financially demanding.16 Caregivers play a critical role in cancer care,
cancer survivors in the US is now over 15.5 million.2 Survivors have but they also experience high psychological distress rates, lack basic
complex unmet psychosocial, physical, and behavioral needs that the health care knowledge and skills, and report increased tension and
health care system is struggling to address.1,3,4 For example, cancer power struggles with both survivors and the health care team.17 19
survivors experience higher rates of psychological distress (ie, depres- Dyadic interventions hold great promise in cancer because they
sion and anxiety symptoms) than the general population.5 This is prob- can simultaneously address survivor, caregiver, and relationship fac-
lematic because increased psychiatric morbidity is related to treatment tors that hinder effective symptom management, caregiving, and
nonadherence,6 8 hospital readmissions,9 and poorer subjective qual- rehabilitation.20 This review describes the state of the science of
ity of life.10 Cancer survivors must also deal with debilitating and dyadic interventions that target survivors and caregivers. It will also
sometimes disfiguring side effects of treatment, progressive functional highlight opportunities and new directions for this burgeoning field
disability/risk of recurrence, and financial problems.11 as well as implications for nursing practice.
Hundreds of evidence-based interventions have been developed to
reduce survivor distress, enhance positive coping and quality of life,
Caregiving and Relationship Challenges Across the Cancer
and improve health behaviors. For the most part, these interventions
Continuum
have had low to moderate effects.12 14 One possibility is that programs
that solely target survivors fail to consider that problems with the sur-
Caregivers play different roles across the cancer trajectory. For
vivor (eg, distress, lack of adherence to self-care recommendations)
example, following diagnosis, they are actively involved in treatment
could be driven by unexamined factors in their caregivers who are
decisions either through active participation in informed decision-
often responsible for providing symptom management, emotional sup-
making or supporting survivor preferences.21,22 During cancer treat-
port, and support with rehabilitation in the outpatient oncology set-
ment (see Table 1), caregivers provide emotional (eg, expressing
ting.15 Caregivers are individuals (eg, spouses/partners, family
empathy, validating feelings) and instrumental support (eg, symptom
members, neighbors, close friends) who provide care that is typically
management, helping with errands, household tasks, transportation,
uncompensated and usually at home, involves significant amounts of
and finances). Likewise, after survivors have been definitively treated,
caregivers provide assistance with rehabilitation, assist with surveil-
This research was supported by National Institutes of Health (grant no. lance, and encourage healthy lifestyle behavioral changes to decrease
R01CA187143 [to H. Badr]); and National Institutes of Health (grant no. P30CA125123 the risk of second cancers and other chronic diseases.23 25
[to Kent Osborne]).
* Address correspondence to: Hoda Badr, PhD, Department of Medicine, Baylor Col-
Even though caregivers play a critical role in health care, they expe-
lege of Medicine, 2450 Holcombe Blvd., Suite 01Y, Houston, TX 77021. rience numerous challenges that can adversely affect their health and
E-mail address: hoda.badr@bcm.edu (H. Badr). well-being as well as that of the survivor. For example, as the primary

https://doi.org/10.1016/j.soncn.2019.06.004
0749-2081/© 2019 Elsevier Inc. All rights reserved.
338 H. Badr et al. / Seminars in Oncology Nursing 35 (2019) 337 341

Table 1 particularly in the absence of constructive communication.49 Declin-

Caregiver’s tasks. ing functional abilities may bring about the necessity for survivors
 Emotional support and caregivers to discuss how care and assistance with daily activities
 Symptom management, knowing when to seek medical advice will be provided to the ill partner.50,51 Survivors and caregivers also
 Helping with errands typically negotiate difficult choices regarding end-of-life treatments
 Household tasks
and care together, and cope with anticipatory grief.52,53
 Transportation to and from appointments and tests
 Finances Finally, for survivors and caregivers who enter the post-treatment
 Rehabilitation survivorship phase, the primary challenge is negotiating the transition
 Surveillance and monitoring to “normal” life particularly in the case where partners may have dif-
 Encourage healthy lifestyle behaviors ferent pace preferences.36 For most, the main tasks include resuming a
sexual relationship, discussing changes in life plans, discussing health
setting for care has shifted from hospital to home, caregivers have behavior changes, dealing with disease and treatment-related late
found themselves in the position of replacing skilled health care work- effects that may influence the survivor’s functioning, managing worry
ers in the delivery of care.26 Their role has also changed dramatically about disease recurrence, and discussing the meaning of the cancer
from promoting convalescence to undertaking complex care tasks (eg, experience for themselves and the relationship.54,55
symptom assessment/management, hygiene care, and medication
administration) and engaging in care coordination.27,28 The time- Dyadic Interventions in Cancer: State of the Science
consuming tasks that caregivers perform may disrupt their own self-
care practices.29 A significant proportion of cancer caregivers report Given the growing acknowledgement that survivors, caregivers,
low engagement in all forms of self-care30; 50% are below population and their relationships are profoundly affected by the cancer experi-
norms on physical health,31 and they experience problems such as ence, there has been a growing emphasis on dyadic interventions that
fatigue, weight loss, burn out, social isolation, and general deteriora- are offered to cancer survivors and their caregiver as the unit of
tion in health as a result of their caring role.32 Caregivers with lower care.20,56 58 Although some dyadic interventions have had no explicit
engagement in self-care also have lower preparedness and decision- or implied theoretical framework, most have been framed using one of
making self-efficacy.30 Another challenge that caregivers experience is three models: 1) individual stress and coping theories, which view
lack of training and support. Many leave the hospital with a lack of social support as a form of coping assistance59 and posit that person-,
confidence in their ability to perform complex care tasks (eg, how to social-, and illness-related factors influence how people appraise and
use and care for stomal appliances, recognize infection, catheterize the cope with an illness; 2) resource theories, which view the partner and
survivor).33,34 The increasing demands placed on caregivers combined relationship as resources survivors can draw upon for assistance dur-
with the lack of training and support may not only contribute to care- ing difficult life events60,61; and 3) dyadic models, which focus on joint
giver strain and burden but also adversely affect their ability to care for problem-solving, coordinating everyday demands, and approaching
the survivor. cancer together as a team.40,62 64 Regardless of theoretical perspective,
Survivor-caregiver relationships can be a tremendous resource, dyadic interventions often include psychoeducational and skills train-
but these relationships are challenged and tested at each juncture ing components (eg, information about cancer and caregiving, self-
along the cancer continuum. In the weeks following diagnosis, survi- care/self-management skills, stress management, training regarding
vors and caregivers must start to negotiate changes in roles and caregiving tasks, and/or relationship-enhancement skills including
responsibilities, deal with interference with life plans, and think communication skills training and dyadic coping).20,56 Therapeutic
about making changes to established patterns of managing household techniques that have been used include cognitive behavior therapy,
and child care responsibilities.35 Survivors and caregivers also strug- education, interpersonal counseling, behavioral marital therapy, and
gle with feelings of blame/self-blame regarding lifestyle behaviors emotion-focused therapy20; most interventions have been delivered
(eg, smoking, drinking alcohol, obesity) that may have caused the by a nurse or specialist health care provider, such as a behavioral thera-
cancer or with different paces or readiness to return to a normal life pist, psychologist, or mental health professional.20,56,65
after cancer treatment.36,37 If left unaddressed, such issues could Recent meta-analyses20,56 have shown that dyadic intervention
adversely affect their relationship and contribute to both partners’ delivery formats have been relatively evenly divided between in-per-
distress.38 son visits (eg, either interventionists come to participants’ homes or
During cancer treatment, declines in physical functioning may participants go to a clinic/hospital to receive the intervention), tele-
interfere with household responsibilities and integrating cancer into phone contact, or a combination of both. Few studies have involved
the everyday routines can become increasingly demanding.39 Given group formats, video-conferencing, or Web-based approaches.66,67
this, it is not surprising that some survivors and caregivers report The vast majority of interventions have also included print materials,
that the cancer experience brought them closer together, and others such as instructional manuals or booklets; however, some have also
experience significant adjustment difficulties that lead to feelings of included audio/video materials to reinforce skills taught. Most have
decreased intimacy and greater interpersonal conflict.40 In addition, involved six sessions; however, the number of sessions has ranged
survivors and caregivers experience communication challenges that from one to 16,68,69 and session length varies from 20 to 120
can adversely affect coordination of care. Both partners may be reluc- minutes.56 In addition, most studies have compared dyadic interven-
tant to discuss fears and concerns in an effort to protect one another tion with a usual care or wait list control condition as opposed to an
from distress.41,42 Even well-meaning caregivers may not know how active control condition.56
to effectively communicate with medical personnel43 or try to assist For the most part, caregivers have been involved in dyadic inter-
the survivor in ways that are controlling or over-protective rather ventions in one of two ways. The first method treats the caregiver as
than supportive.44 Caregivers can also engage in maladaptive com- an assistant or “coach” to facilitate learning and coping skills in the
munication (eg, criticism, nagging)45,46 that can undermine survivor survivor. This approach, sometimes described as “partner-
self-care and adversely affect survivor outcomes.47 Increased caregiv- assisted”70,71 conceptualizes the role of the partner in the interven-
ing responsibilities and treatment side effects can also alter sexual tion as being supportive of the survivor.72 The second method seeks
expression and increase tension between partners.48 In fact, a survey to actively involve the caregiver by focusing on how the dyad func-
study of men with prostate cancer and their wives found high rates of tions together as a unit and addressing both partners’ needs and con-
sexual dysfunction associated with cancer treatment. Greater sexual cerns.20 Future research efforts may thus benefit from determining
dissatisfaction was associated with poorer marital adjustment, whether there are particular survivor, caregiver, or dyad factors that
 H. Badr et al. / Seminars in Oncology Nursing 35 (2019) 337 341 339

might influence when it is more appropriate to conceptualize the Table 2

partner’s role as either supportive or active. Future research areas.

Overall, dyadic interventions targeting survivors and caregivers  Need to identify the individual and dyadic characteristics that either protect or
have had different effects depending on the outcome being exam- increase the risk for poor survivor and caregiver outcomes
ined. For example, small to moderate effects have been observed for  Studies need to include minorities: race, ethnicity, and religion
 Studies need to include individuals with low socioeconomic status
survivor and caregiver psychological functioning (eg, depression,
 Need dyadic studies of relationships other than husband/wife
anxiety, hopelessness, mental health).20,56 Small to large effects on  Dyadic studies should examine various stages of the cancer trajectory, not just
marital functioning have been observed for survivors,20,56 but these after diagnosis
effects may only be short-term in nature (ie, assessed at 3-month fol-  A standard of efficacy for dyadic interventions needs to be established
low-up).56 Effect sizes for marital functioning for caregiving partners  Analysis of individual v dyadic interventions on survivor and caregiver out-
comes are needed
have been small.20,56 Likewise, small to moderate effects have been
 The most beneficial way to instruct people to communicate needs to be studied
observed for survivor physical well-being, but this may be largely based on varying dyad relationships and communication styles
dependent on stage of cancer and it may be unrealistic to expect  Studies are needed to determine why dyadic interventions are seldom imple-
improvement in physical well-being in individuals who have meta- mented in clinical practice settings and what can be done to overcome the
static disease. More work is needed to clarify the definition of clini- barriers
 Trials are needed that test for flexibility in the delivery of dyadic interventions;
cally meaningful changes in the outcomes examined because even Internet, mobile health, and social media to allow for efficient delivery and
small effect sizes can still be clinically significant and important. widespread dissemination
Meta-analyses have highlighted a number of methodologic limita-  Studies are needed to evaluate the cost of different modes of administration
tions in the dyadic intervention literature.20,56 For example, studies do (ie, in person, over the phone, Internet)
not consistently state details of their randomization procedures, and
because interventions are often delivered by trained nurses or psychol- and the centrality or importance of the survivor-caregiver relation-
ogists, they often cannot be blinded. Some studies do not include infor- ship in cancer adaptation. To date, very few studies have investi-
mation on refusal or attrition rates, suggesting reporting standards gated the cancer experience of racial/ethnic minority survivors and
could improve. Studies do not always articulate a theoretical model caregivers, despite the fact that studies suggest that cultural differ-
and few have examined the mechanisms by which interventions ences do exist around gender roles, family boundaries, and percep-
affected outcomes, so there are questions as to whether the theoretical tions of personal control and interdependence.73 In addition,
basis of the intervention is as hypothesized. A related issue is that survivors and caregivers at different stages of the life cycle may
most studies have focused on either spousal or family caregivers and experience different stressors and therefore have different expecta-
have not examined differences in effects based on type of caregiver tions regarding not only social support but also interaction with
(eg, close friend, neighbor, adult child, spouse/partner). one another and with the health care team. There also needs to be
To date, most dyadic intervention studies have had small sample greater recognition that relationships and roles change across the
sizes (N <100), which means they were likely underpowered to cancer continuum. Most studies have evaluated outcomes shortly
examine changes in the multiple outcomes that were measured. This after diagnosis, but very little is known about what happens as sur-
could have contributed to the small to moderate effect sizes observed. vivors and caregivers move into the survivorship phase and have to
At the same time, documented barriers for clinical trial participation, cope with the long-term side effects of cancer and its impact on
such as distance from the trial center, fear of randomization, and per- their relationship and finances. Finally, individuals with low socio-
ceived burden. are only compounded when recruiting for dyadic economic status have been woefully underrepresented in this litera-
studies because the survivor and caregiver both need to agree to par- ture. Socioeconomic status likely reflects who has access and ability
ticipate. Incorporating strategies to reduce burden, such as approach- to attend intervention programs. Thus, creating interventions that
ing survivors and caregivers at routine clinic visits instead of at the can be easily and widely disseminated is critical to advancing this
time of diagnosis, scheduling study-related appointments with medi- field and providing equal access.
cal appointments, decreasing the number of sessions or assessments, Second, the standard of efficacy for dyadic interventions has not
and conducting sessions by phone, the Internet, or in participants’ been definitively established. Some interventions have demonstrated
homes, may help to bolster enrollment and engagement. Likewise, benefit for survivors and caregivers, whereas others have demon-
having physicians or nurses introduce the study instead of research strated benefit for either the survivor or caregiver. Given the time and
coordinators who may not have interacted previously with the survi- resource-intensive nature of dyadic interventions, it is unclear whether
vor or caregiver may also be helpful. benefit for only one partner is sufficient to justify dyadic intervention.
Future research may benefit from an increased focus on couples’ inter-
Future Directions actions to address ways that couples can adaptively cope together.
More work is also needed to compare the effects of individual and
As this narrative review suggests, there is a robust and growing dyadic interventions on survivor and caregiver outcomes.
literature on dyadic processes in cancer and dyadic interventions for Third, most dyadic interventions in cancer have included a com-
cancer survivors and their caregivers, and these interventions have munication skills training component because communication is an
demonstrated beneficial effects in terms of improving multiple important process through which couples make sense of cancer,
aspects of survivor and caregiver quality of life. However, several negotiate role changes, and coordinate coping responses. However,
scientific gaps remain regarding how, why, and for whom these inter- scholars still know very little about what they should instruct couples
ventions are effective, which can help drive future research (see to talk about, how often they should talk, and when talking (or not
Table 2). talking) is beneficial (and for whom the survivor, caregiver, or
First, more work is needed to identify individual and dyadic char- both).67 In a study of naturalistic communication in advanced-cancer
acteristics that either protect or increase the risk for poor survivor couples, Reblin et al74 found that couples rarely engaged in communi-
and caregiver outcomes to enhance our understanding of the role of cation about cancer or about their relationships, and that the majority
dyadic relationships in cancer adaptation. For example, the vast of observed communication was logistical or social small-talk. The
majority of dyadic interventions have enrolled white, middle-class authors concluded that there appear to be few naturalistic cues
participants.20 This ignores the possibility that culture may influ- encouraging couples to discuss potentially difficult topics, and that
ence survivor and caregiver expectations and interactions, attribu- more work is needed to determine appropriate levels of communica-
tions about cancer cause and relationship with the health care team, tion. Couples’ need for talk may also change across the illness
340 H. Badr et al. / Seminars in Oncology Nursing 35 (2019) 337 341

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