At that time, cancer for me and probably for anyone else was an unknown monster who spared no life when it hits you. There were endless nights full of hope for her recovery. At night before I would doze off to sleep I would look at her closely. She still had that same pretty face, beautiful eyes, lovely shaped lips and brilliant mind. But deep inside, it was too painful to see my ever energetic mother lying in bed with all the tubes in her body. Too hurtful to think that all we had shared, our plans might come to an endâ€¦
This is an adolescent daughter’s account of her journey with having a mother diagnosed with cancer. Dealing with maternal cancer can cause distress and anxiety because this illness is usually associated with poor prognosis, agonizing pain, negative effects of the treatment, and low survival rates. Cancer is considered by many as a “silent killer,” which unsuspectingly ravages the body from within. It can be a stressful experience, not only for the patients themselves, but also for the entire family. Every member of the family, especially the children, has to adjust to the emotional burden, physical demands, and lifestyle changes which cancer brings about.
The occurrence of cancer has alarmingly increased throughout the years, affecting and claiming many lives around the world. It has been estimated that around 12.2 million people are diagnosed with cancer worldwide (American Cancer Society, 2007). It is also projected that the number of cancer cases and deaths will continue to escalate in the future. New cancer cases are estimated to increase from 11.3 million in 2007 to 15.5 million in 2030 (WHO, 2008). Based on the worldwide proliferation of cancer cases, this disease is now considered to be a major health problem.
In the local scene, it is estimated that one in every 1,800 Filipinos will suffer from cancer every year (“Philippines’ Breast Cancer,” 2008). Based on the 2005 Cancer Facts and Estimates (cited in “A Look at Cancer,” 2007), approximately 39,929 men and 32,917 women were diagnosed with cancer that year. Consistent with the worldwide trend, the number of cancer patients in the Philippines is also expected to increase in the coming years. The most common cancer sites for both men and women are as follows: lung, breast, liver, cervix, and colon (“A Look at Cancer,” 2007).
Young and middle-aged women are at great risk of developing cancer. According to Hamouy (2007), statistics show that females have one in three chances of getting cancer in their lifetime. This risk is also due to the drastic increase in the number of breast and cervical cancer cases, which are commonly and specifically associated with women. The breast is the most common cancer site among Filipinas. As of 2008, the Philippines had the highest reported cases of breast cancer in Asia, even surpassing other European countries (“Philippines’ Breast Cancer,” 2008). Cervical cancer ranks as the second most frequent type of cancer among Filipino women (World Health Organization, 2007). According to the Department of Health (cited in “DOH Launches,” 2008), approximately 10 Filipinas die from cervical cancer each day.
Women diagnosed with cancer belong to various age groups. However, findings consistently show that cancer risk is positively correlated with age (Baum & Andersen, 2001; “A Look at Cancer,” 2007). This puts older women at greater risk for developing this dreaded disease. In the past years, majority of cancer cases were diagnosed at 50 years old or at a postmenopausal age (Bobadilla, 2006). Unfortunately, there has been an increase in the occurrence of cancer among women in their midlife (Bobadilla, 2006) as well. Recently, the battle against cancer has started to affect younger women. A significant number of women who belong to this population are mothers. It is estimated that 30% of women diagnosed with breast cancer has one or more dependent offspring still under her care (Faulkner & Davey, 2002). The growing incidence of cancer among younger mothers means that more families are being challenged to cope with this disease.
Mothers diagnosed with cancer are faced with various issues in the different facets of their lives. On a personal level, their concerns include experiencing the physical rigors of the disease and treatment, emotional issues, and preoccupation with existential matters. Aside from these, they also have additional sources of stress such as meeting the demands of being wives, mothers, and professionals in their respective fields. Being diagnosed with cancer at this stage in one’s life can be stressful and in some cases, traumatic. This can be attributed to the pressure of having to fulfill different roles despite the physical and emotional demands of the disease. Mothers with cancer are forced to shift their role from taking care of their family to the one being cared for. In effect, although a maternal cancer diagnosis is experienced as a personal crisis, it also makes a great impact on the whole family system.
These families are put in a predicament wherein they have to adapt with the changes and stresses brought about by maternal cancer. As the patient’s roles as a mother and spouse are disrupted, dealing with the illness becomes a shared crisis within the family. The husband and children are forced to adapt with the situation by handling the responsibilities which the mother could not perform, while dealing with their own emotional distress. The stressful nature of the situation puts other family members at risk for psychological distress, especially the children.
In families dealing with maternal cancer, the adolescent daughters are expected to assume the responsibilities of the mother. In the Filipino culture, daughters are reared to help out in domestic chores and assist the mother with her duties (Liwag, Dela Cruz, & Macapagal, 1998). Thus, when the mother is not well enough to carry out her responsibilities, adolescent daughters take over in caring for the family. This additional burden makes adolescent daughters the most vulnerable to experience psychological distress. Such circumstances subject the daughters to witness drastic physical and emotional changes in their mothers, disruption in their daily routines and changes in family roles. Aside from sharing the burden with their family, the daughters are also faced with the challenge of dealing with the developmental demands of being an adolescent. They may experience a variety of emotional responses, the most common of which are depression and anxiety, as a way to cope with their stress. Parents may fail to recognize the distress their daughters are experiencing due to preoccupation with the treatment and their own distress. In effect, the emotional issues harbored by the daughters may not be addressed appropriately.
In the field of psychological research, a large body of studies had already been devoted to investigating the effects of cancer on the different aspects of a patient’s life. It has only been recently that researchers also recognized the need to shift their attention to the children of cancer patients. It is in this vein that the focus of this research will be centered on adolescent daughters whose mothers have cancer. This research will look into the psychological impact of maternal cancer on adolescent daughters, specifically in terms of emotional, behavioral, and social functioning. The mothers’ perceptions regarding how their daughters are dealing with situation will also be explored. It is also of interest to know how maternal cancer affects the relationship between the mother and adolescent daughter.
Review of Literature
Impact of Parental Cancer on the Family
Cancer was found to be associated with psychological distress. Much of past research on cancer has focused mainly on the psychological impact of cancer on the patients themselves (Veach, 1998). Researchers have acknowledged that it is also necessary to look into the effect of cancer within the context of the family.
Family Systems Theory
The family is defined by Buckley (as cited in Papadopolous, 1995) as a system made up of sets of different parts which are interdependent and interconnected. A change in one part causes a change in the entire system. It is comprised of several subsystems which characterize the existing relationships within the family such as parental, marital, and sibling relationships (Faulkner & Davey, 2002). According to the family systems theory, the condition of one family member influences the condition of other family members. It proposes that all the subsystems within the family interact and affect each other (Faulkner & Davey, 2002; Papadopolous, 1995). The members of the family operate in a way that it maintains a balanced level of functioning, also known as equilibrium. The well-being of the family members and the family’s functioning depend greatly on the interaction of the subsystems (Faulkner & Davey, 2002).
Due to the dynamic and interdependent nature of the family system, the roles and psychological functioning of individual members can affect the whole system. A role change initiated by one member will alter how the rest of the members play their roles. In this case, the whole system has to make corresponding changes in their behavior in order to compensate for the disruption in the roles among the members. This adjustment has to be made in order to regain the family’s equilibrium (Jolley & Mitchell, 1996). In the same way, a member’s psychological functioning is strongly influenced by one’s interaction with the other members (Oster & Caro, 1990). In families which are under a great deal of stress, the child is vulnerable to everything that is going on between the parents. The tension or conflict within a family can also induce distress within the child, whether the child is directly exposed to the stressor or not (Sokolova, n.d.).
The Filipino Family
The Philippine society is familial in nature (Jocano, 1995). Filipinos recognize that the family is the most basic institution in the society and is at the center of the affairs of the community. The high regard given to the family can be seen in the strong and pervasive influence this institution exerts towards individuals.
According to Jocano (1995), the Filipino family is superordinate over the members. The life of each member is strongly influenced by the dynamics within the family. An individual must involve the family in decision-making and resolution of important issues. This is because the entire family is affected if something happens to its member, regardless of whether this occurrence is positive or negative. Thus, the Filipino family tends to be protective of its members, as a way to preserve not only the individual but the entire system as well.
In order to uphold the traditional Filipino family system, cultural ideals which guide one’s behavior are instilled in the individual. These ideals are learned through rearing practices and adherence to the society’s norms. The following standards are honored and imbibed by traditional Filipino families: “kapwa,” “damdamin,” and”dangal” (Jocano, 1995, p.7). “Kapwa” refers to establishing interpersonal relationships which are based on equality and empathy. “Damdamin” on the other hand, deals with valuing others people’s emotions and striving in order not to hurts the feelings of others. Lastly, “dangal,” pertains to honoring and respecting others. Despite the changes in the society, in light of modernization, Jocano (1995) found that many Filipino parents continue to inculcate the following cultural ideals to their children: “paggalang,” which is giving respect to people and venerated customs; “pagbabalikatan,” which is empathizing and sharing the burden of others; “pagbabayanihan,” which is cooperating with one another; and” pagmamalasakit,” which is being considerate and concerned with other people’s welfare (Jocano, 1995, pp.7-8).
The Filipino family is also described to be bilateral (Jocano, 1995). This refers to the establishment of close relationships with relatives from both the sides of the mother and father. An individual’s level of affinity towards the maternal and paternal relatives are said to be equal. This bilateral characteristic of the family makes the relationships within the family system wider and more intertwined. In effect, the typical Filipino’s concept of family is not only limited to the nuclear family structure, which is comprised of the parents and their children, but also includes the extended family which includes the relatives from both sides. By going beyond the immediate family, the individual can draw support and security from both the immediate and extended family. Jocano (1995) considers this close kinship among Filipinos as a significant source of strength. This provides an individual with an assurance that there will always be someone to count on when problems arise.
The close ties among relatives and the ideals which families uphold influence the structure of Filipino households (Torres, 1995). It is typical for a nuclear family to share a roof with a few relatives and a nonrelative, which is usually the househelp. This is true, most especially for middle class urban families. In some cases, nuclear families who belong to the same clan reside in separate dwellings which are close in proximity. By maintaining geographical nearness, the extended family and its members are able to strengthen the support that they derive from each other.
Carandang (1987) applied the family systems approach within the context of Filipino families. In line with Western theories on family systems, she suggested that any stress experienced by one member can be vicariously felt by the other members. Each of the family members responds to this stress by acting out in their own unique way.
It has to be taken into consideration that the Filipino family is usually comprised of immediate family members, as well as extended relatives. There is also greater emphasis on maintaining close emotional bond among the family members. This nature of Filipino families makes it a more dynamic and complicated system. In effect, the children are challenged to gain recognition so as not to be lost within the larger system. This makes the children the most vulnerable members of the family because they can be easily affected by the stresses experienced by the family (Carandang, 1987).
When the family is in the middle of a crisis, there is a tendency for the children not to directly articulate their feelings, especially if these are negative and are felt towards the adults in the family. In some cases, these stresses are manifested through the children’s behavior. Carandang (1987) found out that regardless of the socioeconomic status of the family, the children play the role of the family’s protector. Being the protectors, the children absorb the family’s stress and respond through their behaviors.
In the Philippine setting, the family’s “tagasalo” (Carandang, 1987, p. 47) or the one who takes care of the family is considered to be at risk for developing distress. Older siblings, most especially the daughters, are commonly expected to fulfill the role of being the family’s “tagasalo.” Daughters are groomed at an early age to assist in tasks which are domestic and nurturant in nature, such as household chores and caretaking duties. By the time Filipino daughters reach adolescence, they are expected to become “mother substitutes” (Liwag, Dela Cruz, & Macapagal, 1998, p.155). With this new role, adolescent daughters assume a considerable number of their mothers’ household responsibilities.
The study of Go Tian (2003) supports Carandang’s premise that daughters are more likely than sons to assume the role of the tagasalo. Based on her research among Filipino college students, females exhibited higher tagasalo traits than males. In contrast, Udarbe’s (2001) research proposed that the family’s tagasalo is not necessarily related to the child’s gender or birth order. Her findings suggest that the tagasalo generally possesses the following characteristics: strong sense of responsibility, good listener, nurturant, peacemaker and a strong need for control.
Traditionally, women are considered to be central to the functioning of the family. This is due to gender role socialization, which dictates that women are expected and trained to take care of household matters (Liwag, Dela Cruz, & Macapagal, 1998). As the major female figure in the family, the mother’s main role is to handle domestic responsibilities at home. Thus, when a mother is diagnosed with cancer, the family adapts to the situation by assuming the responsibilities which the mother could not handle. This burden is often passed on to the adolescent daughter, who had been trained since childhood to carry out domestic chores.
The impact of cancer within the Filipino family was evident in a local study done by Gorospe (2002). A cancer diagnosis affects the different aspects of a patient’s life, as well as the rest of the family members. The debilitating effect of cancer on the patient can cause a disruption in routine, changes in lifestyle, and limitations in performing one’s responsibilities. Thus, the patient and his family are confronted with overwhelming changes which they have to adjust to. As a reaction to these changes, the entire family undergoes a process of emotional distress characterized by disbelief, denial, and initial resistance to the diagnosis. The roles within the family also have to be re-assigned in order to compensate for the changes related to the patient’s inability to fulfill one’s role.
Family Changes Brought About by Parental Cancer
A mother’s diagnosis of cancer is not an individual struggle. The entire family is subjected to the repercussions of dealing with maternal cancer. According to Robinson, Caroll, and Watson (2005), cancer within the family can be considered as an emotional crucible. This is the shared experience in which the family goes through a series of emotional adjustments. Such experience has been described as both draining and empowering, not only for the cancer patient but for all the family members. The profound stress brought about by the illness affects the relationships and interactions within the family. As a response, the family members’ reactions are manifested through their behavior and emotions (Sargent, 2003).
Parents diagnosed with cancer reported that due to the illness, they were unable to spend time with and address the needs of their children (Walsh, Manuel, & Avis, 2005). This was supported by the study of Faulkner and Davey (2002) which revealed that parental cancer can lead to impaired parenting. The demands of the illness made both the healthy and ill parents less available to their children, emotionally and physically. There were also cases of less communication, decrease in supervision, and lack of consistency in discipline and nurturance.
Such disruption in the family system undeniably exposes the children to many psychological stressors such as: threat of permanent loss of parent to death, temporary loss of parent due to the treatment demands, and changes in family roles and routines (Davey, Askew, & Godette, 2003). This may result in adjustment difficulties and psychological consequences, thus, making the children vulnerable to the impact of having a parent with cancer.
Cancer blurs the roles in the family. The study of Walsh, Manuel, and Avis (2005), which investigated the impact of maternal breast cancer on the family, revealed that because the mothers were not well enough to perform their usual responsibilities at home, they had to transfer some of their family duties to their spouses and children.
Generally, adolescents in the family had to take on more responsibilities at home, such as household chores and caregiving tasks for their younger siblings and the ill parent (Davey, Askew, & Godette, 2003; Davey, Gulish, Askew, Godette, & Childs, 2005; Grabiak, Bender, & Puskar, 2007; Visser, Huizinga, Van der Graaf, Hoekstra, & Hoekstra-Weebers, 2003). Aside from dealing with worry over the ill parent’s condition, the adolescent children in the family felt that their lives were complicated due to the additional responsibilities they had to carry out in order to augment the deficiencies caused by maternal cancer (Davey, Gulish, Askew, Godette, & Childs, 2005).
Psychological Adjustment Among Adolescents of Cancer Patients
The psychological effects of maternal cancer on children are widely investigated. The qualitative study of Forrest, Plumb, Ziebland, and Stein (2006) reported that children already suspected that something was wrong even before they were told about their mother’s diagnosis. They based this suspicion on the mood and behavior changes in their mother. Upon knowing about the maternal cancer diagnosis, the adolescents experienced emotional distress. The initial emotional responses were shock and disbelief, followed by devastation and intense feelings of sadness (Davey, Askew, & Godette, 2003; Davey, Gulish, Askew, Godette, & Childs, 2005).
Compas, Worsham, Ey, and Howell (1996) assessed the emotional distress experienced by children of cancer patients by looking into their depression and anxiety. Their distress arose from their considerable worry about their mother’s health and fear of losing their mother from cancer (Davey, Askew, et al., 2003; Davey, Gulish, et al., 2005; Grabiak, Bender, & Puskar, 2007; Kristjanson, Chalmers, & Woodgate, 2004; Walsh et al., 2005). In some studies, adolescents were also concerned with the possibility of potentially inheriting the cancer (Davey, Askew, et al., 2003; Walsh et al., 2005).
The adolescents’ emotional difficulties partly stemmed from feeling powerless over their parent’s illness. The adolescents felt that they did not have control over the outcome of the diagnosis and treatment, which in turn also affected the moods and accessibility of both parents (Davey, Askew, et al., 2003). Another cause of the adolescents’ distress was witnessing their parent’s pain. Some of the adolescents reported that they were bothered by the side effects of chemotherapy (Forrest et al., 2006). They had to adapt to seeing their usually healthy parent slowly become weak and ill (Davey, Askew, et al., 2003). The positive effect this had on the children was that they became more empathic towards their ill parent. They were also more tolerant and understanding of both their parents, who exhibited increased irritability and moodiness (Davey, Askew, et al., 2003). This was consistent with the findings of Kristjanson et al. (2004) which revealed that the adolescents were sensitive to the suffering of their ill mother. The teenagers expressed that they felt guilty because their own lives were normal, whereas their mother was enduring the painful physical and psychological consequences of cancer. They were able to empathize with their mother’s suffering but they expressed guilt about their own situation.
A local research done by Tantoco (1992) examined the issues confronted by terminally ill mothers and their eldest offspring. Results revealed that the eldest children exhibited considerable anxiety during the process of dealing with their mother’s illness. Many of the participants described their journey as an “emotional roller coaster ride” (Tantoco, 1992, p.73). This experience compelled them to prioritize their mother’s condition. This forced them to put other aspects of their lives, such as studies, work, and heterosexual relationships aside. Given that the eldest children focused much of their attention on their ill mother, they became sensitive to their mother’s physical, emotional, and mental anguish. The children shared that they had difficulties in dealing with their ill mother’s emotional outbursts. Despite this, the eldest in the family also felt the need to give emotional support, security, and assurance to their ill mother. Another source of the eldest children’s stress was their informal role of being next to their parents in terms of responsibility and authority. Being the eldest, they had to take on additional household responsibilities, including caring of their ill mother and younger siblings. These extra tasks required them to make personal sacrifices such as not being able to engage in their usual adolescent activities.
Aside from emotional problems, behavioral changes were also observed among children of cancer patients. Increased crying, clinging, difficulty in sleeping, and changes in the intensity of talking were some of the behaviors which children engaged in after their parent was diagnosed with cancer (Visser et al., 2003). There are inconsistent findings in terms of the children’s school performance. Some adolescents showed a decline in their academics and attendance (Visser et al., 2003; Grabiak, Bender, & Puskar, 2007. This was due to their inability to concentrate during school hours because of their preoccupation with their parent’s illness and the disruptions in their routine (Visser et al., 2003; Forrest et al., 2006). However, some adolescents actually performed better in school even though they were dealing with parental cancer (Visser et al., 2003).
Positive behavioral changes also surfaced as the adolescents were dealing with their mother’s cancer. The adolescents expressed that they appreciated their mother more even when the diagnosis and treatment were over. They showed this newfound appreciation by constantly checking on how the ill mother is doing, wanting to be physically close, paying more than usual attention to mother’s needs, and wanting to offer support (Visser et al., 2003; Davey, Gulish et al., 2005). Some adolescents also reported that they took over their mother’s role even if it meant an increase in their responsibilities. This contributed to their perception that they were older than their years, after having gone through that experience (Davey, Gulish et al., 2005). Daughters whose mothers have cancer also became more involved with the medical aspects of the treatment. Even though they were less convinced that things will work out, they took more initiative in handling the medical concerns of their mother (Gilbar & Borovik, 1998).
According to Grabiak, Bender, and Puskar (2007), the behavioral adjustment of adolescents rely heavily on the emotional condition of both parents and on the family functioning. When both parents display symptoms of depression, adolescents tended to show increased behavioral problems. Between the two parents, maternal depression exerts a stronger influence on the child’s behavioral functioning. It was also found that adolescents who experienced difficulty with behavioral adjustment perceived their families as having poor quality of communication, responsiveness, and involvement.
In the aspect of social functioning, the study of Osborn (2007) found no evidence to suggest that social competence is negatively affected among children of cancer patients. In a few studies, adolescents of cancer patients even reported handling their social lives more effectively than those from the norm groups (Osborn, 2007). This favorable social functioning may be attributed to the strong social support which the adolescents actively seek and maintain.
Common sources of social support were family, friends, school counselors, teachers, and support groups (Davey, Askew, & Godette, 2003; Grabiak, Bender, & Puskar, 2007; Huizinga, Van der Graaf et al., 2005). Adolescents felt that their peers were positive sources of support with whom they could talk openly about their feelings and fears. However, some teenagers expressed that their friends had difficulty empathizing with their situation. They felt that their friends could not really understand what it is like to have a mother diagnosed with cancer. This feeling further highlights the sense of isolation which the adolescents sometimes feel. They felt more consoled when they talked to peers who were also experiencing the same adversity (Huizinga, Van der Graaf et al., 2005).
Similarly, Filipina adolescents place importance on having strong social ties. Being more emotionally involved in relationships and having higher levels of interpersonal needs, warmth, and sensitivity are important factors which contribute to the finding that female adolescents are less lonely than their male counterparts. Their need for interaction actually reduces the feelings of loneliness because Filipina adolescents have a richer source of social and emotional support (Jimenez, 2009).
Adolescents of Cancer Patients in Comparison With Control Groups
Several studies compared the psychological functioning of adolescents whose parents have cancer vis-a-vis a control group. Inconsistent findings were found.
A number of studies reveal that adolescents of cancer patients and the control group did not significantly differ in terms of emotional, behavioral, and social functioning (Brown et al., 2006; Harris & Zakowski, 2003; Hoke, 2001; Huzinga, Van der Graaf, Visser, Djikstra, & Hoekstra-Weebers, 2005; Osborn, 2007; Visser, et al., 2007). The similarity in the levels of psychological distress between adolescents of cancer patients and the control group can be attributed to the children’s efforts to mask their true feelings. They were aware that their parents were already under a great deal of stress. The adolescents showed that they were not affected by the situation so that their parents would not worry about them. This was their way of protecting their parents from additional stress (Visser et al., 2007).
Although no significant differences were found in terms of psychological distress, a percentage of the adolescents of cancer patients exhibited scores within the clinical range. In the study of Houck, Rodrigue, and Lobato (2006), one-third of the adolescents whose parents have cancer reported clinical levels of posttraumatic stress in response to their parents’ illness. In addition, approximately 25% to 30% of the adolescents in both the studies of Visser et al. (2007) and Huizinga, Van der Graaf et al. (2005) reported clinically elevated scores in internalizing and externalizing problems. Internalizing problems refer to turning one’s emotions inward. This is manifested through withdrawal, somatic symptoms, anxiety, and depression. On the other hand, externalizing problems are more noticeable ways of dealing with stress because they are reflected through one’s behavior. This can be in the form of socially unacceptable, delinquent, and aggressive behavior (Visser et al., 2005). Consistent with the abovementioned, Osborn (2007) proposed that adolescents of cancer patients generally did not experience higher levels of psychological distress compared to reference groups. However, they were slightly at increased risk for internalizing problems.
Some studies found that adolescents of cancer patients are more emotionally distressed than those from the control sample. The research of Grabiak et al. (2007) revealed that adolescents whose parents have cancer displayed a significantly higher level of anxiety compared to the age-normed sample. Visser et al. (2003) supported this claim as their study found that when compared to a control group, adolescents dealing with parental cancer exhibited significantly higher stress-response symptoms, which included avoidance and intrusive thoughts. In another study, adolescents of cancer patients also displayed significantly higher levels of perceived risk for developing cancer than adolescents who have healthy parents (Harris & Zakowski, 2003). Despite this, it is interesting to note that these two groups did not differ in depression and anxiety. Hoke (2001) found that adolescents coping with maternal cancer did better in their social and academic endeavors when their mother was more distressed. This is in comparison with adolescents in the control group who did less well when their mother was more distressed.