INTRODUCTION
Cancer comes with important social, economic and emotional repercussions (International Agency for Research on Cancer, 2014). It is now considered a public health problem, particularly in developing countries. In Colombia, its incidence increased from 2002 to 2006, with 70,877 new cases (International Agency for Research on Cancer, 2014). Care is defined as the act of assistance and support directed to improve a patient's condition (Vélez Angel, Reference Vélez Angel2008; Galviz et al., Reference Galvis, Pinzón and Romero2004; Carretero et al., Reference Carretero, Garcés and Ródenas2009). Caregiving may become an experience that has an intense emotional impact due to affective and relationship issues and the commitment that it requires (Sterckx et al., Reference Sterckx, Coolbrandt and Dierckx de Casterlé2013; Arber et al., Reference Arber, Hutson and de Vries2013). Caregiving is generally performed by family members and, in most cases, is assumed by a single person (known as the principal caregiver), who is most commonly a woman between the age of 45 and 65 years (Vélez Angel, Reference Vélez Angel2008; Krikorian et al., Reference Krikorian, Vélez and González2010).
Caregiver burden is caused by the many responsibilities involved and the changes that occur in family and social life. In accordance with Zarit (Vahidi et al., Reference Vahidi, Mahnavi and Asghari2016), caregiver burden is related to the physical, psychological, and social responses of the caregiver, which may arise from an imbalance between care needs and fulfilling care tasks (Vahidi et al., Reference Vahidi, Mahnavi and Asghari2016; Truzzi et al., Reference Truzzi, Valente and Ulstein2012). Caregiver burden has been found to increase emotional distress—for example, the prevalence of emotional distress in caregivers of patients with advanced cancer ranges between 20 and 50% (Donnelly et al., Reference Donnelly, Anderson and Johnston2008; Hodges et al., Reference Hodges, Humphris and Macfarlane2005). It may be associated with negative attitudes toward the disease, avoidance, relationship problems between caregiver, patient, and other family members, as well as difficulties related to anticipated bereavement (Donnelly et al., Reference Donnelly, Anderson and Johnston2008; Hodges et al., Reference Hodges, Humphris and Macfarlane2005; Harding et al., Reference Harding, List and Epiphaniou2012). Between 20 and 25% of caregivers manifest feelings of not being ready to face death (Grov et al., Reference Grov, Dahl and Moum2005) and suffer negative repercussions in terms of their physical and psychological well-being (Schulz & Sherwood, Reference Schulz and Sherwood2008; Hudson et al., Reference Hudson, Remedios and Zordan2012).
Although caring for an advanced cancer patient becomes challenging due to the associated emotional distress (Hudson & Payne, Reference Hudson and Payne2011; Papastavrou et al., Reference Papastavrou, Charalambous and Tsangari2012), the use of active coping strategies may increase perceived competence (PC) and lessen the stress associated with caregiving tasks (Limonero et al., Reference Limonero, Tomás-Sábado and Fernández-Castro2006; Herrera-Jiménez & Delgado Suárez, Reference Herrera-Jiménez and Delgado Suárez2008). PC is defined as the expectation that a person has about the possibility of acting positively in the face of events, and it includes perception of contingency and self-efficacy. Persons with high PC tend to see stressful situations as a challenge, thereby enabling coping by focusing on the problem and controlling their emotional responses (Ángeles Pastor et al., Reference Ángeles Pastor, Martin-Aragon and López-Roig2009). PC mediates psychosocial adaptation to anxiety and stress by stimulating positive reevaluation of stressful events while reducing their negative consequences (Ángeles Pastor et al., Reference Ángeles Pastor, Martin-Aragon and López-Roig2009).
During the previous decades, special attention has been focused on the study of emotions and the role they play in adaptation to one's environment (Papastavrou et al., Reference Papastavrou, Charalambous and Tsangari2012). In this context, the concept of “emotional Intelligence” (EI) emerged, which is defined as the capacity to recognize, comprehend, and regulate one's own and others' emotions, to differentiate them, and to use this information as a guide for thought and actions (Limonero et al., Reference Limonero, Tomás-Sábado and Fernandez-Castro2010; Lengua & Long, Reference Lengua and Long2002). It modulates emotional discomfort in stressful situations and has been found to predict coping, happiness, and psychological adjustment in teenage depression, anxiety, and subjective fatigue, among other things (Papastavrou et al., Reference Papastavrou, Charalambous and Tsangari2012; Limonero et al., Reference Limonero, Tomás-Sábado and Fernandez-Castro2010). “Emotional regulation” (ER) is a key component of EI and is defined as the ability to regulate or control one's emotions (positive and negative) and those of others. It plays an important role in coping with stressful and anxiety-provoking situations, and contributes positively to personal well-being (Papastavrou et al., Reference Papastavrou, Charalambous and Tsangari2012; Limonero et al., Reference Limonero, Tomás-Sábado and Fernandez-Castro2010; Reference Limonero, Tomás-Sábado and Fernández-Castro2004; Lengua & Long, Reference Lengua and Long2002).
The concept of resilience was developed (Limonero et al., Reference Limonero, Fernández-Castro and Soler-Oritja2015) along with the construct of EI and within the paradigm of positive psychology. In accordance with Forés and Granes (Limonero et al., Reference Limonero, Fernández-Castro and Soler-Oritja2015) and Rutter (Becoña, Reference Becoña2006), resiliency is understood as the capacity to overcome adversity, to achieve recovery, and to become stronger after exposure to a traumatic psychosocial event. It is considered a coping strategy (Limonero et al., Reference Limonero, Fernández-Castro and Soler-Oritja2015; Becoña, Reference Becoña2006; Limonero et al., Reference Limonero, Tomás-Sábado and Fernández-Castro2012a).
According to Limonero et al. (Reference Limonero, Tomás-Sábado and Fernández-Castro2012a), most people can overcome adverse situations. Although they may initially manifest intense negative emotions, these feelings tend to decrease over time and with adaptation. A study carried out in Mexico with mothers of children with cancer found that the characteristics of resilience in caregiving mothers were linked to altruism, self-esteem, and social affiliations, while a positive correlation was found between resilience and establishing an empathetic relationship with the sick child they were caring for (Sinclair & Wallston, Reference Sinclair and Wallston2004).
Unfortunately, research on the role of resilience, EI, PC, and other psychological factors in the adaptation process of caregivers of patients with cancer and other chronic illnesses has been scarce (González-Arritia et al., Reference González-Arritia, Nieto and Valdes2011). Identifying protective factors in caregivers is relevant, as it may help in designing strategies and interventions to prevent burden in caregivers while helping them to better cope with caregiving tasks.
Consequently, the present study aimed to identify the influence of such psychological factors as EI and PC on levels of burden in the main caregivers of Colombian advanced cancer patients. We hypothesized that (1) high levels of resilience would be related to increased emotional well-being, and (2) competent caregivers with high levels of ER who find positive motivation in caring will manifest lower levels of burden.
METHOD
Participants
A convenience sample of caregivers was employed. A total of 50 informal caregivers of adult patients with advanced cancer who attended the pain and palliative care units or the psychological unit at the Instituto de Cancerología Clínica las Américas in Medellín, Colombia, were invited to participate. Caregivers who voluntarily accepted to participate and signed the written informed consent were included. Caregivers of children with cancer and those who did not care for a patient with an advanced disease were excluded.
Materials
A sociodemographic instrument was designed, and the following instruments were administered.
The Emotional Distress Detection Questionnaire (EDDQ) in its Spanish version (DME–C) was utilized to assess the emotional distress of caregivers of patients with an advanced illness (Lavretsky et al., Reference Lavretsky, Siddarth and Irwin2010; Limonero et al., Reference Limonero, Mateo and Mate2012b; Maté et al., Reference Maté, Sirgo and Mateo2009). It consists of two questions that examine emotional distress and coping efforts in a 0-to-10 visual analogue scale format. This scale was also developed for use in populations of caregivers of patients with advanced illness.
Resilience strategies were evaluated using the Brief Resilient Coping Scale (BRCS) (Limonero et al., Reference Limonero, Tomás-Sábado and Fernández-Castro2012a; Reference Limonero, Sábado and Gómez2014) in its Spanish-adapted version (Limonero et al., Reference Limonero, Maté-Méndez and Mateo2016). Total scores range between 4 and 20. Scores below 13 indicate low resilience, while scores above 17 indicate high resilience (Limonero et al., Reference Limonero, Maté-Méndez and Mateo2016).
Anxiety and depression were evaluated using the Hospital Anxiety and Depression Scale (HADS) (Rico et al., Reference Rico, Restrepo and Molina2005). It was validated in Colombia in 2005 by Rico and coworkers. It is a 14-item self-administered questionnaire and comprises two subscales: anxiety and depression. The maximum score for each subscale is 21. Cutoff scores below 7 are considered normal, between 8 and 10 are considered to indicate probable cases, and above 11 indicate problems with clinical depression or anxiety (Rico et al., Reference Rico, Restrepo and Molina2005; Zigmond & Snaith, Reference Zigmond and Snaith1983).
The abbreviated Zarit Caregiver Burden Scale was employed to assess level of burden. A Spanish version validated in Chile was administered (Breinbauer et al., Reference Breinbauer, Vásquez and Mayanz2009). It consists of 7 items. Scores >6 indicate lack of burden, while scores ≥17 are indicative of intense burden (Breinbauer et al., Reference Breinbauer, Vásquez and Mayanz2009).
Coping strategies were examined using the Coping Strategies Instrument (CSI) in its Spanish version, which was adapted by Cano and colleagues (Cano et al., Reference Cano, Rodriguez and García2007; Tobin et al., Reference Tobin, Holroyd and Reynolds1989). It is a 40-item instrument and examines 8 dimensions of coping strategies: self-criticism, emotional expression, problem solving, wishful thinking, social support, cognitive restructuring, problem avoidance, and social isolation (Tobin et al., Reference Tobin, Holroyd and Reynolds1989).
The Positive Aspects of Caring Scale was used to evaluate the emotional and affective aspects of the caring experience (Hilgeman et al., Reference Hilgeman, Allen and DeCoster2007; Pires & Limonero, Reference Pires and Limonero2008). This scale was developed in the United States and Spanish-adapted by Pires and Limonero (Reference Pires and Limonero2008). It comprises 9 items that examine the positive aspects of caregiving at the end of life in the palliative context. Total scores range from 9 to 54.
The Perceived Competence Scale, created by Wallston in 1992 (Smith et al., Reference Smith, Wallston and Smith1995; Sanz et al., Reference Sanz, Fernández and Doval1998), was utilized to evaluate PC. A validated Spanish version was administered. The instrument comprises eight items that measure individual expectations on how efficiently they can manage their environment. Total scores fluctuate between 8 and 48, with higher scores indicating greater perceived competence (mean score = 35.4) (Sanz et al., Reference Sanz, Fernández and Doval1998).
Emotional intelligence was assessed via the Emotion Regulation Scale, developed by Gross and John (Cabello et al., Reference Cabello, Salguero and Fernández-Berrocal2013), and translated into Spanish by Cabello and colleagues (Gross, Reference Gross, Pervin and John1999). This instrument was derived from the process model of emotion regulation proposed by Gross (Reference Gross, Pervin and John1999), where emotion regulation can occur either before or after the generation of emotion, resulting in two different strategies: “cognitive reappraisal” and “expressive suppression.” It is a 10-item self-administered questionnaire.
Procedure
The ethics committee of the institution approved our study protocol. A written informed consent was requested from all respondents. Anonymity and confidentiality were guaranteed. The study was conducted in accordance with the Declaration of Helsinki. Patients who attended the psychological consultation and the pain and palliative care unit were invited to participate. Once the caregivers agreed to participate, they were informed about the details of the study and asked to sign a written informed consent form. Data were then collected using a structured interview performed by an experienced and trained clinical psychologist who guided the interview (Gysels et al., Reference Gysels, Shipman and Higginson2014).
Statistical Analysis
The data were collected and analyzed using the Statistical Package for the Social Sciences (SPSS, v. 20.0). Descriptive statistics were obtained. Associations between the different variables were explored, and the following statistical tests were employed: (1) the Mann–Whitney U test was used to compare differences in study variables between groups; (2) Pearson's correlation coefficient; and (3) multiple regression analysis of repeated measures, using burden and emotional distress as dependent variables and perceived competence, resilience, coping strategies, emotional regulation, positive aspects of care, and demographics variables as independent variables.
RESULTS
Most caregivers were women (88%), with an average age of 48 years (SD = 13, range = 20–79). They mostly lived in urban areas (94%), and 70% had completed high school or had more advanced education (college or university). Half of the caregivers were married, and 84% lived with their families. They were most commonly the daughters, sisters, or wives of the patient they cared for. The most frequent occupational status was housekeeper, independent worker, or employee. They were predominantly practicing Catholics. The average length of care was 20.4 months (SD = 20.70, range = 1–96). (For detailed sociodemographic data, see Table 1).
Table 1. Sociodemographic data
According to the results obtained with the CSI, the most common coping strategies used by caregivers were problem solving, social support, cognitive restructuring, emotional expression, and wishful thinking, and the least-used ones were problem avoidance, self-criticism, and social withdrawal (Table 2).
Table 2. Descriptive statistics
Some 56% of caregivers reported high levels of resilience, with scores ≥17. Cognitive restructuring was employed more frequently than emotional suppression. According to the EDDQ, levels of emotional distress were found to be moderate to high. Regarding emotional distress as assessed by the HADS, caregivers had higher anxiety scores than depression scores. More than half of them (54%) did not present with burden scores ≤16. Caregivers scored high on positive aspects of caring and moderately on perceived competence (Table 2).
Since variables presented a normal distribution, a Pearson correlation analysis was carried out in order to test for associations between them, and a negative and significant correlation between cognitive restructuring and burden was found. Emotional suppression was found to have a significant positive relationship with depression and with HADS global score, and a significant negative association with PC (Table 3).
Table 3. Correlation matrix of study variables
* p < 0.05. ** p < 0.01.
Emotional distress as assessed by the EDDQ and HADS indicated a positive and significant correlation with burden and an inverse significant correlation with PC and positive aspects of care. Cognitive restructuring had an inverse significant correlation with emotional distress (Table 3).
A Mann–Whitney U analysis was carried out to examine differences between emotional distress (low emotional distress <10.5, high emotional distress >10.5) and burden (low burden <16, high burden >17). Differences were found between emotional distress and resilient style and cognitive restructuring among caregivers. In addition, differences were found between lower emotional distress, higher cognitive restructuring (Z = –2,236, p < 0.05), and high resilience (Z = –2.23, p < 0.05). Low levels of emotional distress resulted in increased resilience and cognitive reevaluation.
Multiple linear regression analyses using successive steps showed that PC had a negative predictive effect on burden levels (R2 = 0.08, t = –2.15, p < 0.05). Positive aspects of care were found to have a negative predictive effect on burden (t = –4.33, p < 0.05), resilient style had a positive predictive effect on burden (t = 2.351, p ≤ 0.05, t = 3.2, p < 0.05), and the interaction between PC and resilient style was found to have a negative predictive effect on burden (t = –2.78, p < 0.05). In summary, PC, resilient coping style, and positive aspects of care had a significant influence on burden, but not on emotional distress (Table 4).
Table 4. Regression analysis: Prediction for perceived competence, resilience coping style, positive aspects of caring vs. burden
Dependent variable: Zarit Burden Scale score.
+Resilient strategies style.
++Perceived competence.
DISCUSSION
The purpose of our study was to identify the role of resilience, ER, PC, and coping strategies on levels of burden in the caregivers of patients with advanced cancer.
Regarding sociodemographic characteristics, the data indicating that caregivers were mostly women is consistent with the findings reported in the literature (Vélez Angel, Reference Vélez Angel2008; Goldzweig et al., Reference Goldzweig, Merims and Ganon2013). In addition, caregivers were between 20 and 34 years of age, indicating that young adults were becoming more responsible for the care of these patients.
Caring for advanced cancer patients in most cases has consequences for the caregiver: reduction in and sometimes interruption of many daily activities, financial problems, psychological changes, social changes (particularly in terms of social roles), and spiritual changes—all affecting the overall quality of life (Cormio et al., Reference Cormio, Romito and Viscanti2014; Prue et al., Reference Prue, Satin and Porter2015). These consequences are usually detected after long periods of caregiving and after they have had psychological and physical effects, not only upon caregivers but also on the patients themselves (Grov et al., Reference Grov, Dahl and Moum2005; Schulz & Sherwood, Reference Schulz and Sherwood2008; Hudson et al., Reference Hudson, Remedios and Zordan2012).
Most caregivers of patients with advanced cancer report high levels of burden, which affects adaptation to their role as well as patient support (Carretero et al., Reference Carretero, Garcés and Ródenas2009; Donnelly et al., Reference Donnelly, Anderson and Johnston2008; Hodges et al., Reference Hodges, Humphris and Macfarlane2005). In our study, levels of burden were lower than those reported in previous studies (Carretero et al., Reference Carretero, Garcés and Ródenas2009; Donnelly et al., Reference Donnelly, Anderson and Johnston2008; Hodges et al., Reference Hodges, Humphris and Macfarlane2005). This is possibly associated with the length of time of care, which was 20 months on average. There was also no single main caregiver per patient, and the tendency to view positive aspects, the search for support, and less emotional suppression are aspects that may contribute to protecting caregivers from burden.
The results obtained showed an inverse and significant relation between emotional distress (as assessed by the EDDQ), HADS global score, anxiety, depression, burden, PC, and positive aspects of care. Higher emotional distress and burden are associated with lower PC and lesser recognition of the positive consequences of caregiving.
The perception of control and competence not only influences acknowledgment of the caregiver's abilities but also leads them to play an active role in care. In turn, it promotes mobilization of personal resources when facing stressful situations, decreases negative consequences, and favors identification of personal benefits (Limonero et al., Reference Limonero, Tomás-Sábado and Fernández-Castro2006). For example, one study carried out in Spain with nursing students found a positive relationship with reduction of anxiety when faced with death, and higher levels of PC indicated that PC becomes a protective factor when facing potentially threatening situations, promoting psychological adjustment to difficulties with the activities of daily life and higher satisfaction with life (Herrera-Jiménez & Delgado Suárez, Reference Herrera-Jiménez and Delgado Suárez2008).
Meanwhile, caregivers who had high cognitive restructuring scores experienced less emotional distress. Understood as the capacity to regulate emotions, emotional intelligence can favor selection of coping strategies that result in better emotional adjustment and an increased sensation of control and self-efficacy. It has been found that subjects with a greater ability to regulate emotions demonstrate greater efficacy in social relations, adopt empathic attitudes, and are more cooperative and satisfied with affective relationships (Ángeles Pastor et al., Reference Ángeles Pastor, Martin-Aragon and López-Roig2009; Limonero et al., Reference Limonero, Tomás-Sábado and Fernandez-Castro2010; Reference Limonero, Tomás-Sábado and Fernández-Castro2004).
Regarding coping efforts, we found that searching for social support, attending to positive aspects, expressing emotions, wishful thinking, and problem resolution were the strategies more frequently used by the caregivers in our study. They constituted protective factors with respect to burden and enabled a diligent search for benefits within the caregiving experience in our participants. These findings are similar to those of a descriptive study carried out in 2008, where three ways of coping were identified: search for support, problem solution, and self-control (Hudson & Payne, Reference Hudson and Payne2011). Accordingly, emotion-focused coping strategies have been found to be related to a decrease in perception of burden (Hudson & Payne, Reference Hudson and Payne2011).
Such aspects as personal beliefs in self-control, emotional regulation when facing stress, reliance on personal abilities, and the capabilities of caregivers can have determinant effects on decreasing emotional discomfort and burden (Donnelly et al., Reference Donnelly, Anderson and Johnston2008). They may also influence the use of direct actions to improve caring activities and can yield personal benefits and well-being for caregiver and patient (Galvis et al., Reference Galvis, Pinzón and Romero2004; Carretero et al., Reference Carretero, Garcés and Ródenas2009; Donnelly et al., Reference Donnelly, Anderson and Johnston2008; Goldzweig et al., Reference Goldzweig, Merims and Ganon2013; Cormio et al., Reference Cormio, Romito and Viscanti2014). Our results suggest that healthcare staff should promote these competencies among the main caregivers through psychoeducational processes. Improving their competency will impact their immediate well-being as well as providing long-term benefits (e.g., facilitating adaptation to the death of a loved one and to bereavement processes).
As mentioned earlier, studies on resiliency, ER, PC, and psychological factors in caregivers of patients with advanced cancer are still scarce. The available studies indicate that burden and emotional distress are closely related to adjustment problems in caregivers, resulting in diminished well-being in both caregivers and patients (Carretero et al., Reference Carretero, Garcés and Ródenas2009; Sterckx et al., Reference Sterckx, Coolbrandt and Dierckx de Casterlé2013; Krikorian et al., Reference Krikorian, Vélez and González2010). Although the present study has limitations related to sample size, the data obtained are relevant to understanding caregiver behavior and experiences, mainly related to their capacity to care and the emotional consequences of caregiving. Further research on the positive aspects of caring and such psychological aspects as resiliency, perceived competence, and emotional regulation that favor coping in caregivers will help us to understand how they promote health and adaptation to the caregiving experience along the course of the disease trajectory. This is of particular importance given the relevant role that caregivers play in the support of advanced cancer patients.
Given the results of our study, we find that some of the characteristics of caregivers who achieve better adaptation can be trained and enhanced—for example, perception of personal competence, self-esteem, assessment of situations in the coping process (changing threats presented by challenges), active coping strategies, and regulation of emotions, among others. With this knowledge, we could provide effective resources for caregivers that would enable them to be more competent, thus facilitating their adaptation abilities and reducing the impact of caregiver burden. These aspects should be taken into account when designing a protocol about preventive action.
CONFLICTS OF INTEREST
The authors hereby declare that they have no conflicts of interest to disclose.
ACKNOWLEDGMENTS
This study was supported in part by grant PSI2013-43555-R from the Ministerio de Economía y Competitividad MINECO (Spain).
