It is well accepted that the diagnosis of cancer and its treatment affect both patients and their family caregivers,1 particularly spousal caregivers.2–4 The diagnosis of cancer and its treatment can change the relational dynamics between people with cancer and their intimate partners, which can have an impact on the subjective well-being and ability to cope of both patients and their partners.5 The impact is felt in such areas as quality of life (QOL), psychological health, and role adjustment.6,7 This has caused the research and practice of cancer care to shift from an emphasis on the individual experiences of patients or spousal caregivers to those of caregiver-patient dyads.8
Studies on couple-based interventions have shown that various theoretical frameworks were adopted to guide the design of these interventions, including the Stress and Coping Model (SCM),9 the Adaptation Model of Couples Functioning,10 Emotionally Focused Therapy,11,12 Spiegel’s Supportive-Expressive Model,13 Equity Theory,14 the Relationship Intimacy Model (RIM),15,16 and the Social-Cognitive Processing Model of Emotional Adjustment to Cancer and Coping Theory.17 Most of these theoretical frameworks focus on the couple’s relationship, with the exception of 1 that focuses on the stress-coping process at the individual level. However, none of these frameworks specifically address the process and needs of couples coping with cancer at the dyadic level.
With research beginning to shift the focus from individual to caregiver-patient dyads, it is proposed that the conceptualization of a comprehensive framework that specifically addresses the process and needs of couples coping with cancer at the dyadic level is of paramount importance. It is intended in this literature review to develop such a conceptual framework to guide the direction and development of a supportive intervention that specifically addresses the dyads of couples coping with cancer is of paramount importance. Such a framework should delineate the event and situation to be considered, the essential components to be included in the intervention, the specific approaches/strategies to be adopted, and the outcome indicators of program effectiveness.
Aim of This Literature Review
The objective of this literature review was to develop a preliminary conceptual framework (P-CF) for cancer couple dyads based on models or conceptual frameworks used in related literature on spousal caregiving for patients with cancer. Developing such a framework will not only make possible a better understanding of concepts related to the situation of couples coping with cancer but also facilitate the development of interventions to support caregiver-patient dyads in coping with cancer.18
Electronic, manual, and author searches were conducted for couple-based intervention studies related to couples coping with cancer. The search terms searched were dyadic appraisal or dyadic coping or cope or coping or intervention or program or therapy AND cancer or oncology or carcinoma AND couple or partner or spouse AND carer or caregiving or caregiver. Included were the literature in English and Chinese from the date of the establishment of the 4 databases that were searched (Science Citation Index Expanded [1970+], PsycInfo [1806+], Medline [1950+] via OvidSP, and CINAHL database [1982+]) to June 2013.
The articles that were selected were restricted to those published in peer-reviewed journals. Only those intervention studies targeting couples that had adopted a framework to guide their interventions were selected for review. This report differs from a traditional literature review in that we synthesized the models or frameworks used in those studies rather than the outcomes of those studies. The flow diagram of the search and selection process of studies on couple-based interventions is outlined in Figure 1.
The Theoretical Concept Analysis Process and the Construction of the Conceptual Framework
The theoretical concept analysis process19 was applied to guide the development of the framework. As recommended by Walker and Avant,20 extensive reviews of literature on different aspects and experiences of couples coping with cancer were taken into account.21–24 The frameworks adopted in the selected studies were based on the context of cancer and family caregivers. The constructs and concepts that had been included in the previous 4 published reviews of the relevant literature21–24 and the concepts/components included in the conceptual framework of the 9 intervention studies were meticulously scrutinized.
A matrix table was created to delineate the key constructs/components from each framework under scrutiny. The 2 researchers each carefully examined the included components and conceptual frameworks, scrutinizing each concept for its definition, attributes, antecedents, and consequences and examining the interventions presented in the 9 studies as exemplifying cases. This was done according to the suggested procedure for the construction of theories.20 The 2 researchers then sat together to discuss thoughts and ideas and to resolve any disagreements. A critical and analytical process was adopted to appraise the conceptual implications of the selected frameworks, and the researchers brainstormed about ways to synthesize the broad range of concepts and variables into a P-CF for cancer dyads.
It was through the process of an extensive review that a number of frameworks on different aspects of the caring experience of spousal caregivers were identified. The reviews included the spousal experience of caregiving,21 hidden morbidity among spousal caregivers,22 the positive aspects of caregiving,23 and the mutual impact of spousal caregiving.24 These reviews of the literature on the spousal experience of providing care to cancer patients adopted the SCM,25 the Conceptual Framework of the Positive Aspects of Caregiving (CFPAC),18 the RIM,15 a Development-Contextual Model of Couples Coping With Chronic Illness (CCCI),26 and the Cancer Family Caregiving Experience Model (CFCE).8
These conceptual frameworks formed the basis of the development of this P-CF. Each of these frameworks and its included components were examined in detail to determine the essential characteristics of the caregiving and coping experience of cancer dyads. Those constructs and/or components that were considered worthwhile and significant were grouped, arranged, and tabulated under the identified key domains of the cancer dyads and finally developed and proposed as the P-CF for cancer dyads.
The Selected Frameworks for Cancer Couples: Key Constructs and Components
The key constructs and components of the 5 selected frameworks adopted in intervention studies for cancer and couples are discussed below.
Among the various stress and coping frameworks, the SCM is most widely adopted in studies related to stress from cancer.25 According to the model, coping is a process that unfolds in the context of an event or situation that is appraised as personally significant and as taxing or exceeding the individual’s resources for coping.27 The coping process is initiated in response to the individual’s appraisal that important goals have been harmed, lost, or threatened.28 This appraisal takes place particularly at the outset of an event when the individual evaluates the personal significance of the event (primary appraisal) and options for coping (secondary appraisal).29
Coping can be characterized as problem-focused, emotion-focused, and meaning-focused coping. In problem-focused coping, attempts are made to alter a stressful situation using strategies such as information seeking, planning, and problem solving. Emotion-focused coping involves regulating situation-related emotions using strategies such as positive reappraisal or behavioral disengagement.28 Meaning-focused coping is appraisal-based coping in which the person draws on his/her beliefs, values, and existential goals to motivate and sustain coping and well-being during a difficult time, such as the period after a diagnosis of cancer.29
The outcomes of coping can be adaptive (positive reappraisal) or maladaptive (denial). The assumption is that individuals who are adaptive at coping can regain a sense of control over challenges and are less likely to experience stress than those who are maladaptive. In this sense, coping not only is a valuable concept that explains the variability in response to stress but also serves as a portal for interventions, in that coping skills that lead to positive adaptions to the stressful situation can be learned. However, even though coping strategies might address, ease, and/or resolve the stressor, a favorable resolution might not be always possible in life-threatening illnesses such as cancer. It is proposed that the coping process should focus on fostering positive emotions despite the presence of negative feelings engendered by the unresolved stressor.25 The adoption of meaning-focused coping could help the individual to find some benefits from the illness process or be reminded of the benefits he/she has received in life, learn adaptive goal processes, reorder life priorities, and infuse ordinary events with positive meanings.29,30
The revised SCM25 acknowledges that there is a place for positive emotions in the stress process, that is, that negative and positive emotions can both occur in event outcomes. There is considerable empirical evidence showing that positive and negative adaptive outcomes often co-occur among individuals diagnosed with cancer and their partners.8,31 Positive affect has its own important adaptational significance in the context of stress through facilitating the processing mechanisms of important and self-relevant information, promoting creativity and flexibility in thinking and problem solving, buffering against the adverse physiological consequences of stress, offsetting the deleterious physiological effects of stress, and preventing clinical depression.29,30
The SCM is a conceptual basis for this P-CF for cancer couple dyads in terms of the process of coping with stress and includes the domains of event situation, coping, and outcomes. In the P-CF, the events specified in SCM are incorporated in the event situation domain; coping involving problem-, emotion-, and meaning-focused coping is incorporated in the dyadic coping construct under the domain of caregiver-patient dyads; and the fostering of positive emotional outcomes despite the presence of negative feelings engendered by the unresolved stressor25 will be adopted in the dyadic outcome construct.
The CFPAC focuses on the positive aspects of family caregiving. Although the CFPAC was originally proposed and developed for family caregivers of people with dementia, the various studies that were referenced include studies on family caregivers for patients with cancer.18 The CFPAC covers the domains of the positive aspects of caregiving, the determining factors, and the positive outcomes.18
The domain of the positive aspects of caregiving includes the components of “the quality of the daily relationship of the caregiver/care-receiver,” “a feeling of accomplishment,” and “the meaning of the role in daily life.” The domain of the determining factors of the positive aspects of caregiving includes the components of daily enrichment events and caregiver’s sense of self-efficacy. The domain of the positive outcomes includes the components of caregiver well-being and involvement continuity.18 Both well-being and involvement continuity were proposed to represent meaningful outcomes to consider in CFPAC.
It was emphasized that “the various domains and components of the conceptual framework are interdependent and work together to reinforce the caregivers’ well-being and support their involvement.”18(p330) The quality of the daily relationship of the caregiver/care receiver will be considered under the event situation domain as components of the secondary stressor construct in the P-CF. The determining factors, including the components of the daily enrichment events and the caregiver’s sense of self-efficacy, are included in the mediators domain of the P-CF. The positive aspects, including the caregiver’s feeling of accomplishment and the meaning of the role in the daily life components of CFPAC, are included in the P-CF under the dyadic appraisal construct. The positive outcomes, including the components of caregiver well-being and involvement continuity, are the components of the dyadic adjustment/outcomes construct in the P-CF.
Despite the strengths of the SCM and the Positive Aspects of Caregiving Model, the focus of both models is on the caregiving experience at the individual level. With research beginning to shift in focus from the individual level to the caregiver-patient dyads level, it is time to consider conceptual work at the dyadic level.
The RIM proposes that the relationship behaviors of couples influence the psychological adaptation of couples through their effects on relational intimacy, such as the feeling of emotional closeness with one’s partner.15 According to this model, relationship behaviors can be either relationship enhancing or relationship compromising. Relationship-enhancing behaviors include reciprocal self-disclosure, partner responsiveness, and relationship engagement. Relationship-compromising behaviors include avoidance, criticism, and pressure-withdraw, where 1 partner pressures the other to discuss concerns whereas the other partner withdraws.
This model highlights the importance of the couple’s relationship and their engagement in communication that sustains and/or enhances the relationship during stressful times. It supports the notion that communication can help caregiver-patient dyads to cope with cancer and improve outcomes. The 3 components of relationship-enhancing behaviors, namely, reciprocal self-disclosure, partner responsiveness, and relationship engagement, are adopted in the P-CF under the domain of dyadic mediators. The outcome of couple relationship is included under the construct of dyadic adjustment in terms of marital satisfaction.
A Development-Contextual Model of the CCCI
A development-contextual model of the CCCI26 extends the SCM25 by acknowledging the reciprocal nature of stress and coping within couples. This model consists of the 3 main domains of the coping process: dyadic appraisal, dyadic coping, and dyadic adjustment.26
Dyadic appraisal refers to the components and representation of the illness, illness ownership, and whether the couple shared the stressors.26 Dyadic coping is conceptualized as a continuum of couple involvement ranging from the noninvolvement of the spouse, that the patient perceives that he/she is alone in coping with the stressful event, to the overinvolvement of the spouse, that the patient perceives the spouse as controlling, in that the spouse dominates the actions of the ill partner by taking charge and telling the partner what to do. In this continuum, supportive coping refers to the spouse providing emotional and/or instrumental support, and collaborative coping refers to the spouse being actively involved through joint problem solving. Although appraisal processes are depicted as being temporally prior to coping strategies, it is acknowledged that coping strategies most certainly affect appraisal processes. For example, the collaborative coping of the couples leads to the consideration that stressors are shared.26
According to the model, dyadic appraisal and dyadic coping are anticipated to be predictive of dyadic adjustment. Supportive and collaborative dyadic coping strategies are associated with better adjustment when couples share the illness representations and the stressors.26 This model provides an understanding of how couples may together appraise and cope with the illness, in determining whether there will be positive spousal adjustment.
The domains in this model of dyadic appraisal, dyadic coping, and dyadic adjustment contributed to the development of the P-CF by defining the 3 constructs of the caregiver-patient dyads. The 3 main domains of the coping process, namely, dyadic appraisal, dyadic coping, and dyadic adjustment, became the 3 constructs under the domain of caregiver-patient dyads. The components of dyadic appraisal in the CCCI, including appraisal of the illness representations, illness ownership, and specific stressor appraisals identifying whether the spouse shares the stressful event, are components under the dyadic appraisal construct in the P-CF. Meanwhile, supportive coping and collaborative dyadic coping are included as components under the construct of dyadic coping in the P-CF.
The CFCE is an expanded comprehensive model that was developed based on research on caregiving in families with cancer published from 2000 to 2010.8 It addresses 3 main domains of caregiving: the stress process, contextual factors, and the cancer trajectory. The model suggests that the caregiver-patient dyad is the focus and direction of research on the caregiving experience of families with cancer.8
The stress process domain stems from the classic stress and coping conceptual framework of the SCM.25 The domain of stress process of this CFCE consists of 5 broad constructs: primary stressors, secondary stressors, appraisal, cognitive-behavioral responses, and health and well-being outcomes.8 The primary stressors include patient illness-related factors and care demands. Secondary stressors, also known as spillover effects, include role and relationship, self-concept, schedule and lifestyle, sleep/fatigue, and employment and finance. Appraisals of stressors are unique to the personal characteristics of the caregivers, including spirituality, self-efficacy, optimism, and caregivers’ esteem. Cognitive-behavioral responses were conceptualized as the ability to cope, plan ahead, self-care, and engage in caregiving behaviors that mediate stress in caregiving. Health and well-being are the outcomes of a stress process affected directly or indirectly by primary and secondary stressors, appraisals, and cognitive-behavioral responses. This construct consists of mental health, physical health, health-related QOL, life satisfaction, meaning, adjustment, and personal growth.
The domain of contextual factors includes cultural, life stage, economic, and health system characteristics. The cancer trajectory is defined as the course of the disease process and treatment over time.8 In the CFCE model, the diagnosis of cancer initiates both the cancer trajectory and the stress process. Both are embedded in the contextual domain of personal, social, and health system contexts and are dynamic across time.8
The caregiver-patient dyad is conceptualized by 3 dyad-level concepts: communication, reciprocal influence, and caregiver-patient congruence.8 Communication is “a transactional process in which individuals create, share, and regulate meaning,”8(p395) and reciprocal influence is “the effect the two members of a dyad have on each other.”8(p394) Meanwhile, in caregiver-patient congruence, “the concept of congruence synthesizes individual data into a dyad variable, related to agreement, concordance, and their opposite, disparity.”8(p394) It is emphasized that the caregiver-patient dyad has thus far been the object of less conceptualizing than the individual patient or caregiver and should become the direction and focus of research. Therefore, it is an area for which a more comprehensive framework needs to be developed.8
The components, such as illness-related factors and care demands in primary stressors and role conflict, caregiver-patient relationship, schedule disruptions, loss of sleep, and fatigue in secondary stressors in the stress process domain of the CFCE, constitute the primary and secondary stressors, respectively, in the event situation domain of the P-CF. The cancer trajectory domain of CFCE has also been adopted under the construct of primary stressors. As for the contextual factors, including cultural, life stage, economic, and health system characteristics, this has been applied in the construct of secondary stressors under the event situation domain of the P-CF.
The construct of cognitive-behavioral responses in the stress process domain falls under the construct of dyadic coping under the domain of caregiver-patient dyads in the P-CF. Cognitive-behavioral responses include planning ahead and self-care and caregiving behaviors. The 3 dyad-level concepts of communication, reciprocal influence, and caregiver-patient congruence constitute components of the construct of dyadic appraisal. The constructs of health and well-being, which measure the physical and mental well-being of the dyads, fall under the dyadic adjustment/outcomes construct in the P-CF. The caregiver-patient dyad as the focus and direction of the caregiving experience of families with cancer suggested by the CFCE has been adopted as the domain of the caregiver-patient dyad in the P-CF.
The Preliminary Live With Love Conceptual Framework for Cancer Couple Dyads
On the basis of the characteristics of the conceptual frameworks that were reviewed, we propose a P-CF for cancer couple dyads to guide the development of a program for cancer dyads: the spousal caregiver and the cancer patient (Figure 2). This P-CF contains 3 domains: event situation, dyadic mediators, and caregiver-patient dyads.
Based on the framework of the SCM, CFPAC, and CFCE, the domain of event situation includes the 2 constructs of primary and secondary stressors.8,18,25 The primary stressors refer to factors related to the patient’s illness, such as the stage of the cancer, the patient’s physical health, care demands (dependency), and the cancer trajectory. Secondary stressors consist of role conflict, the caregiver-patient relationship, schedule disruptions, loss of sleep, fatigue, and contextual factors.
A previous literature review21 also showed that the spousal caregivers of cancer patients experienced high levels of stress in caregiving, arising from both primary and secondary stressors. The experience of stress was mediated by how the caregivers appraised their situations and what their cognitive-behavioral responses were.
Factors related to the patient’s illness, such as the stage of the cancer, physical health, and care demands (dependency), were associated with the physical and mental health of the spousal caregivers. Spousal caregivers suffered from spillover effects due to secondary stressors, such as role problems, lack of social and emotional support, disrupted schedules, and loss of sleep and fatigue. The characteristics of the caregivers, including their ability to find meaning and benefits from caregiving, spirituality, self-efficacy, optimism, and self-esteem, affected the spousal caregivers’ appraisal of their caregiving experience.21
It is worth considering contextual factors that may contribute to the experience of caregiving, including cultural influences, gender, age, and relationships with the patients. Studies have indicated that the complexity of cultural32 and culturally sensitive33 support needs to be considered when providing support to caregivers. Although the findings related to gender differences related to the caregivers’ experience were inconclusive, in general, female caregivers suffered more than did male spousal caregivers of cancer patients in all dimensions of hidden morbidity, such as physical, mental, and social morbidity.22 Older caregivers were reported to have a more positive outlook in such areas as perceived rewards,34 appreciation of life,35 and stronger relationships with care receivers.36 Spousal caregivers were less likely than other family caregivers to report mastery over their lives,34 but there were no differences between spouses and other family members with respect to finding benefits from caregiving.35
The dyadic mediators domain includes the following components: daily enrichment events and caregiver’s sense of self-efficacy from the CFPAC18 and relationship-enhancing strategies from RIM, including reciprocal self-disclosure, partner responsiveness, and relationship engagement.15
According to the CFPAC,18 the components of daily enrichment events and caregiver’s sense of self-efficacy were identified as the 2 determining factors of the positive aspects of caregiving.20 Daily enrichment events were also reported to reinforce the positive aspects of caregiving.18 These included taking time out for oneself to do such things as go for a walk, rest, or just grieve privately away from the patient.32,37
Findings from intimacy-enhancing interventions that applied relationship-enhancing strategies from RIM showed the effects on improving the perceptions of both patient and partner of the closeness of their relationship, including self-disclosure, perceived partner disclosure, and partner responsiveness, and on reducing their levels of stress.15,16
The main focus of this P-CF is the domain of caregiver-patient dyads.15,25,26 The domain of caregiver-patient dyads includes 3 constructs: dyadic appraisal, dyadic coping, and dyadic outcomes. These 3 constructs are borrowed from CCCI.26
The construct of dyadic appraisal conceptualized in this P-CF contains components from the CFPAC, CCCI, and CFCE. The components from the CFPAC include the meaning of the role in daily life and caregivers’ feeling of accomplishment.18 The components from the CCCI include the appraisal of the illness representations, illness ownership, and specific stressor appraisals identifying whether the spouse shares the stress from the stressful events.26 The components from the CFCE include communication, reciprocal influence, and caregiver-patient congruence.8
Dyadic coping is conceptualized from the SCM, CCCI, and CFCE. The problem-, emotion-, and meaning-focused coping from the SCM25 and the supportive and collaborative dyadic coping from the CCCI26 were included. Dyadic coping strategies include cognitive-behavioral responses from the CFCE, such as planning ahead, self-care, and caregiving behaviors.8
Dyadic adjustment/outcomes are conceptualized from the SCM, CFPAC, RIM, and CFCE. The following components were included: caregiver well-being and involvement continuity from the CFPAC18; physical and mental health from the CFCE8; negative and positive emotions from the SCM25; and marital satisfaction from the outcomes of a couple’s relationship in RIM.15
There is growing recognition that cancer affects the couple as a unit, rather than as isolated individuals, leading to the couple’s reaction to a cancer diagnosis being characterized as an “emotional system.”38 It is reported that couples have a mutual impact on one another with regard to their QOL, psychological health, and role adjustment.6,7 A review of the literature on the mutual impact of spousal caregiver-cancer patient dyads highlights the importance of a relationship perspective and communication within couples in any study of couples coping with cancer.24
The Naming of the P-CF and the Diagram Symbolizing the Chinese Character for “Fortune”
When the authors were searching for a name for this P-CF for easy reference, the term love came to mind. Love in this context is defined as “the active care and concern for the growth to wholeness of the human person.” “Live With Love” was coined with the intention of evoking the deep inner love that couples have for each other. It is hoped that couples will love and be loved in the process of coping with cancer together, easing the hardships brought about by the serious illness of one of the partners. Without the feeling of loving and being loved, the act of caregiving would not exist. With these thoughts in mind, the framework was given the name of a preliminary Live With Love Conceptual Framework (P-LLCF).
The 3 domains of event situation, dyadic mediators, and spouse-patient dyads were arranged as shown in Figure 2. Event situation, including primary stressors and secondary stressors, is located at the bottom of the diagram, which means that the event situation acts as an “action wheel” for the cancer couple dyad’s process of coping. The dyadic mediators, situated above the action wheel, act as “leverage” to balance or offset the stressors, leading to the dyadic appraisal, coping, and adjustment of the cancer couple dyads.
It is important to note that there are direct and indirect interrelationships among the 3 domains of event situation, dyadic mediators, and caregiver-patient dyads. The same relationships may exist among the 3 constructs of dyadic appraisal, dyadic coping, and dyadic adjustment in the caregiver-patient dyads domain.
Positive dyadic adjustment/outcomes are the ultimate goal and the central focus of cancer couple dyads. The 2 constructs of dyadic appraisal and dyadic coping at each side of the dyad adjustment/outcomes category are to be weighted to maintain the balance of the whole caregiving experience of the dyads, as shown in Figure 2. The resulting preliminary framework for cancer couple dyads resembles the Chinese character, meaning “fortune.” The intervention program guided by this framework can lead to positive outcomes in the caregiving experience of caregiver-patient dyads, with improvements in communication, dyadic appraisal, coping, and outcomes throughout the cancer trajectory, facilitating, and guiding the dyads to continuously “Live With Love.”
This Live With Love conceptual framework sheds new light on the study of cancer couple dyads. As described earlier, love in this context is defined as “The active care and concern for the growth to wholeness of the human person.” To our knowledge, this is one of the first conceptual frameworks to specifically focus on a couple’s love in the context of cancer. This P-LLCF has the potential to be useful in developing support programs and services based on this cancer couple dyads’ perspective. The various components in this P-LLCF will work together to benefit the couple’s love, namely, to produce positive dyadic adjustment/outcomes for spousal caregiver-patient dyads in their journey of coping with cancer. According to the framework, supportive couple-based interventions that focus on the various domains and constructs depicted in P-LLCF (including the domains of event situation and dyadic mediators and the constructs of dyadic appraisal and dyadic coping under the domain of caregiver-patient dyads) will facilitate the couple’s love in terms of positive dyadic adjustment/outcomes.
A couple-based program, named the Caring for Couples Coping With Cancer “4Cs” program, has been developed based on this P-LLCF to proceed with the testing of this framework. It takes into account all 3 domains of P-LLCF, namely, event situation, dyadic mediators, and caregiver-patient dyads. This program was designed to consist of 6 weekly sections, each lasting for 90 minutes. The main contents of these 6 sections are as follows: primary stressors (section 1): caring for your spouse with cancer; secondary stressors (section 2): improving cancer dyads’ role adjustment and their relationship; dyadic mediator (section 3): improving cancer dyads’ self-efficacy and their relationship; dyadic appraisal (section 4): improving cancer dyads’ sharing of the stressful events; dyadic coping (section 5): improving cancer dyads’ supportive and collaborative coping; and a program overview (section 6).
The intervention will be delivered in groups by the researcher/nurse counselor. A guidebook entitled Live With Love: Hope for the Best, Prepare for the Worst has been drafted and will be used to complement the group intervention program. On the basis of P-LLCF, couples’ QOL in terms of physical health and mental well-being, continuity of involvement, self-efficacy, negative and positive emotions, and marital satisfaction and relationship will be measured at baseline, after the completion of the 4Cs program, and 3 months after.
It is essential to acknowledge several constraints in the development of this P-LLCF. A search of the relevant literature on couples coping with cancer was carried out using 4 electronic databases that provided comprehensive coverage of key nursing and health-affiliated journals published. Publication bias could not be avoided in the literature search process.
This P-LLCF was developed based on the assumption that the relationship of caregivers and patients will be strengthened by the cancer/caring experience. It is also the intention to evoke the deep inner love that couples have for each other and that the couples could find benefits from the illness, including feeling of emotional closeness and relational intimacy. However, there must be scenarios that patient-carer dyads have been separated and come together only because of the illness and that the carers feel burdened and guilty, take on without choice, or are resentful of the situation. Future research is needed to test if interventions developed based on this P-LLCF will benefit these different scenarios among patients and carers.
Future Research Directions
This P-LLCF includes both dyadic-level and individual-level components. It is proposed that direct and indirect interrelationships exist among the 3 domains of event situation, dyadic mediators, and caregiver-patient dyads. The same relationships may exist among the 3 constructs of dyadic appraisal, dyadic coping, and dyadic adjustment in the domain of caregiver-patient dyads. Future research is needed to explore these interrelationships among different domains, constructs, or components from a dyadic-level perspective.
Although it is expected that the components in this P-LLCF will work together to lead to positive dyadic adjustment for spousal caregiver-patient dyads in their journey of coping, it is unrealistic for practitioners to focus on all of the components at the same time. More research is needed to identify the outcomes of interventions that focus primarily on a single component and also the outcomes of interventions that focus on different combinations of different components.
Dyadic adjustment/outcomes in P-LLCF include the components of caregiver well-being and involvement continuity, physical and mental health, negative and positive emotions, and marital satisfaction. It should be noted that a variety of measurements were used in couple-based intervention studies to measure the same concept or outcomes. For instance, various measurements were used to measure marital satisfaction, including the 0-to-10 Ladder scale,14 the Cancer Rehabilitation Evaluation System,39 the Dyadic Adjustment Scale,16 the Family Relationship Index,13 the Personal Assessment of Intimacy in Relationships Inventory,15,16 the Quality of Marriage Index,10,40,41 the Revised Dyadic Adjustment Scale,11,12,42,43 and the positive/negative scale.44 This not only affected the research outcomes but also made it difficult to compare the findings between interventions. Measurements are 1 of the challenges for researchers of coping strategies.28 A further study needs to be conducted to develop measurements to assess dyadic adjustment/outcomes.
Conclusions and Implications for Nursing
A P-CF for cancer couple dyads, Live With Love, has been proposed. This framework is a potentially valuable guide for developing related interventions for cancer couple dyads. These include educational interventions on event situations (primary and secondary stressors), psychological interventions on dyadic mediators (couples’ self-efficacy and relationship-enhancing behaviors), and skill training for couples on self-disclosure. Such interventions will improve dyadic outcomes such as the well-being, positive emotions, and relationship of the couples. The exploration of the interrelationships among different components will aid the development of supportive couple-based interventions in the context of cancer. Future research is needed to assess the effects of interventions on dyadic adjustment, as well as the feasibility and applicability of this framework for cancer dyads.
1. Kayser KP, Watson LEM, Andrade JTM. Cancer as a “we-disease”: examining the process of coping from a relational perspective. Fam Syst Health. 2007; 25 (4): 404–418.
2. Glajchen M. The emerging role and needs of family caregivers in cancer care. J Support Oncol. 2004; 2 (2): 145–155.
3. Pitceathly C, Maguire P. The psychological impact of cancer on patients’ partners and other key relatives: a review. Eur J Cancer. 2003; 39 (11): 1517–1524.
4. Cain R, MacLean M, Sellick S. Giving support and getting help: informal caregivers’ experiences with palliative care services. Palliat Support Care. 2004; 2 (3): 265–272.
5. Dankoski ME, Pais S. What’s love got to do with it? Couples, illness, and MFT. J Couple Relationship Ther. 2007; 6 (1–2): 31–43.
6. Kim Y, Kashy DA, Wellisch DK, Spillers RL, Kaw CK, Smith TG. Quality of life of couples dealing with cancer: dyadic and individual adjustment among breast and prostate cancer survivors and their spousal caregivers. Ann Behav Med. 2008; 35 (2): 230–238.
7. Northouse LL, Mood D, Templin T, Mellon S, George T. Couples’ patterns of adjustment to colon cancer. Soc Sci Med. 2000; 50 (2): 271–284.
8. Fletcher B, Miaskowski C, Given B, Schumacher K. The cancer family caregiving experience: an updated and expanded conceptual model. Eur J Oncol Nurs. 2012; 16: 387–398. doi:10.1016/j.ejon.2011.09.001.
9. Northouse LL, Mood DW, Schafenacker A, et al. Randomized clinical trial of a family intervention for prostate cancer patients and their spouses. Cancer. 2007; 110 (12): 2809–2818.
10. Heinrichs N, Zimmermann T, Huber B, Herschbach P, Russell DW, Baucom DH. Cancer distress reduction with a couple-based skills training: a randomized controlled trial. Ann Behav Med. 2012; 43 (2): 239–252.
11. McLean LM, Jones JM, Rydall AC, et al. A couples intervention for patients facing advanced cancer and their spouse caregivers: outcomes of a pilot study. Psychooncology. 2008; 17 (11): 1152–1156.
12. McLean LM, Walton T, Rodin G, Esplen MJ, Jones JM. A couple-based intervention for patients and caregivers facing end-stage cancer: outcomes of a randomized controlled trial. Psychooncology. 2013; 22 (1): 28–38.
13. Collins AL, Love AW, Bloch S, et al. Cognitive existential couple therapy for newly diagnosed prostate cancer patients and their partners: a descriptive pilot study. Psychooncology. 2013; 22 (2): 465–469.
14. Kuijer R, Buunk B, De Jong G, Ybema J, Sanderman R. Effects of a brief intervention program for patients with cancer and their partners on feelings of inequity, relationship quality and psychological distress. Psychooncology. 2004; 13 (5): 321–334.
15. Manne S, Badr H. Intimacy and relationship processes in couples’ psychosocial adaptation to cancer. Cancer. 2008; 112 (11 suppl): 2541–2555.
16. Manne SL, Kissane DW, Nelson CJ, Mulhall JP, Winkel G, Zaider T. Intimacy-enhancing psychological intervention for men diagnosed with prostate cancer and their partners: a pilot study. J Sex Med. 2011; 8 (4): 1197–1209.
17. Scott JL, Halford WK, Ward BG. United we stand? The effects of a couple-coping intervention on adjustment to early stage breast or gynecological cancer. J Consult Clin Psychol. 2004; 72 (6): 1122–1135.
18. Carbonneau H, Caron C, Desrosiers J. Development of a conceptual framework of positive aspects of caregiving in dementia. Dementia. 2010; 9 (3): 327–353.
19. Risjord M. Rethinking concept analysis. J Adv Nurs. 2009; 65 (3): 684–691.
20. Walker LO, Avant KC. Strategies for Theory Construction in Nursing. 4th ed. Upper Saddle, NJ: Pearson Prentice Hall; 2005.
21. Li Q, Mak YW, Loke AY. Spouses’ experience of caregiving for cancer patients: a literature review. Int Nurs Rev. 2013; 60 (2): 178–187.
22. Li Q, Loke AY. A spectrum of hidden morbidities among spousal caregivers for patients with cancer, and differences between the genders: a review of the literature. Eur J Oncol Nurs. 2013; 17 (5): 578–587.
23. Li Q, Loke AY. The positive aspects of caregiving for cancer patients: a critical review of the literature and directions for future research. Psychooncology. 2013; 22: 2399–2407.
24. Li Q, Loke AY. A literature review on the mutual impact of the spousal caregiver-cancer patients dyads: ‘communication’, ‘reciprocal influence’, and ‘caregiver-patient congruence’. Eur J Oncol Nurs. 2014; 18(1): 58–65. doi: 10.1016/j.ejon.2013.09.003.
25. Folkman S. Positive psychological states and coping with severe stress. Soc Sci Med. 1997; 45 (8): 1207–1221.
26. Berg CA, Upchurch R. A developmental-contextual model of couples coping with chronic illness across the adult life span. Psychol Bull. 2007; 133 (6): 920–954.
27. Lazarus RS, Folkman S. Stress Appraisal and Coping. New York, NY: Springer; 1984.
28. Folkman S, Moskowitz JT. Coping: pitfalls and promise. Annu Rev Psychol. 2004; 55: 745–774.
29. Folkman S. The case for positive emotions in the stress process. Anxiety Stress Coping. 2008; 21 (1): 3–14.
30. Folkman S, Moskowitz JT. Positive affect and the other side of coping. Am Psychol. 2000; 55 (6): 647–654.
31. Northouse L, Kershaw T, Mood D, Schafenacker A. Effects of a family intervention on the quality of life of women with recurrent breast cancer and their family caregivers. Psychooncology. 2005; 14 (6): 478–491. doi:10.1002/pon.871.
32. Mangan PA, Taylor KL, Yabroff KR, Fleming DA, Ingham JM. Caregiving near the end of life: unmet needs and potential solutions. Palliat Support Care. 2003; 1 (3): 247–259.
33. Mok E, Chan F, Chan V, Yeung E. Family experience caring for terminally ill patients with cancer in Hong Kong. Cancer Nurs. 2003; 26 (4): 267–275.
34. Kang J, Shin DW, Choi JE, et al. Factors associated with positive consequences of serving as a family caregiver for a terminal cancer patient. Psychooncology. 2013; 22(3): 564–571. doi: 10.1002/pon.3033.
35. Kim Y, Schulz R, Carver CS. Benefit-finding in the cancer caregiving experience. Psychosom Med. 2007; 69 (3): 283–291.
36. Lindau ST, Surawska H, Paice J, Baron SR. Communication about sexuality and intimacy in couples affected by lung cancer and their clinical-care providers. Psychooncology. 2011; 20 (2): 179–185.
37. Hudson P. How well do family caregivers cope after caring for a relative with advanced disease and how can health professionals enhance their support? J Palliat Med. 2006; 9 (3): 694–703. doi:10.1089/jpm.2006.9.694.
38. Hagedoorn M, Sanderman R, Bolks HN, Tuinstra J, Coyne JC. Distress in couples coping with cancer: a meta-analysis and critical review of role and gender effects. Psychol Bull. 2008; 134 (1): 1–30.
39. McCorkle R, Siefert ML, Dowd MF, Robinson JP, Pickett M. Effects of advanced practice nursing on patient and spouse depressive symptoms, sexual function, and marital interaction after radical prostatectomy. Urologic Nursing. 2007; 27 (1): 65–77.
40. Baucom DH, Porter LS, Kirby JS, et al. A couple-based intervention for female breast cancer. Psychooncology. 2009; 18 (3): 276–283.
41. Porter LS, Keefe FJ, Baucom DH, et al. Partner-assisted emotional disclosure for patients with gastrointestinal cancer results from a randomized controlled trial. Cancer. 2009; 115 (18): 4326–4338. doi:10.1002/cncr.24578.
42. Shields CG, Rousseau SJ. A pilot study of an intervention for breast cancer survivors and their spouses. Fam Process. 2004; 43 (1): 95–107.
43. Thornton AA, Perez MA, Meyerowitz BE. Patient and partner quality of life and psychosocial adjustment following radical prostatectomy. J Clin Psychol Med Settings. 2004; 11 (1): 15–30.
44. Mohr DC, Moran PJ, Kohn C, et al. Couples therapy at end of life. Psychooncology. 2003; 12 (6): 620–627.