Care Needs of Children Whose Parents Have Incurable Cancer Essay

Results

Anticipated Vs. Sudden Death

Nine articles reviewed for this literature study have several common themes. One of the common themes raised in the articles under consideration is anticipatory grief or the effect of forewarning of death on the children’s perception of one of their parents’ death. The literature on this topic is extremely valuable because it is not often that the circumstances of parental death and their effect on the further life and health of children are discussed. This issue is necessary to pay attention to because circumstances in which parents die from cancer (sudden or anticipated death) may create additional stressors for children. These stressors need to be taken into account by nurses trying to meet the care needs of children whose parents suffer from cancer. Most of the researchers focus their studies on identifying whether forewarning of death can be beneficial for children. However, the greatest amount of them discovers that the sudden death of a parent is less stressful for children than the anticipatory one.

Two of the articles under consideration agree with the idea that anticipatory death is more stressful for children than sudden one. The study carried out by Saldinger, Cain, Kalter & Lohnes (1999) begins with the discussion of possible benefits that forewarning the death of a parent may bring. One of such benefits is that anticipated death gives the members of the family, children, in particular, time to say goodbye and to get accustomed to the idea that an important person will be soon missing from their lives:

In the cognitive realm, anticipation is believed to facilitate acceptance of death, making the final outcome more understandable and predictable. On a practical level, terminal illness presents an opportunity to plan for the future (e.g. financial security) or, more broadly, to become socialized into the role of the bereaved. (Saldinger et al. 1999, p. 49)

As stated by these researchers, children who are aware of their parent’s death develop adaptive coping strategies which facilitate their adjustment to the parent’s death. However, they can hardly perceive the fact of the forewarning of death as beneficial due to the nature of their loss, the loss of a parent (Saldinger et al. 1999). However, the researchers are hesitant as for the benefits of anticipatory death for children. They express an idea that children’s understanding of death is limited; besides, they “may have a greater need than adults to deny an impending death, and thus may be less able to avail themselves of the opportunity to say goodby” (Saldinger et al. 1999, p. 40). In addition, in case with a terminal illness, the attention is shifted from the child because the healthy parent overtakes the responsibilities of a caretaker. Being left with practically no attention, the child becomes exposed to stress and loses the sense of stability. This all leads to stressful situations for a child even before the death of a parent, let alone the postmortem period when the child’s needs are ignored because the remaining parent is usually consumed with grief.

Being guided by these explanations, the researchers aim to explore the benefits of the anticipatory death of a parent assuming at this that the sudden one is more beneficial (or, to be more exact, less stressful) for children. The number of families that took part in the research carried out by Saldinger et al (1999) was 41; at this, children aged 3-15 (when they lost a parent) were interviewed. The researchers explored the level of mental suffering in all the participants comparing the families that knew about the death of a parent with those that did not. At this, the researchers took into account a number of factors, such as socioeconomic status of the families, their nationality, religion, as well as age and gender of the parents who died. Their study supported a hypothesis that forewarning of death does not reduce the level of suffering in children and family members.

Another study discussing the same theme was carried out by Saldinger, Cain & Portefield (2003). Unlike the previous study, the authors of this one did not even discuss possible benefits of anticipatory death focusing at once on its disadvantages. The authors criticize the idea that the anticipated death helps to accommodate to an impending death. They state that,

… this romantic view of anticipated deaths ignores the many strains upon family members when a loved one is battling a life-threatening illness. Those strains include, among other things, dramatic changes in daily routines, financial insecurities, coping with intensive treatment regimens and their side effects, dilemmas about treatment choices, and the psychological cost of the uncertainty of illness outcome. (Saldinger et al. 2003, p. 169)

This allows the authors assuming that anticipatory deaths are extremely traumatic for children and family members. Consequently, this contributes into an idea that sudden deaths are less burdensome and cause less traumatic stress. The study presented by these authors serves as an extension for the one discussed above. The authors provide certain qualitative data to support the idea that “children and adults in anticipated deaths fared worse than their sudden-death counterparts” (Saldinger et el. 2003, p. 170). In addition to the 41 families interviewed, the researchers involved another 17 families into their research.

To reduce possible bias, the authors paid attention to the cases with common symptoms. This allowed them to objectively evaluate the results because the family members taking care about the dying person experienced the same feelings and problems as other participants. It is worth mentioning that the majority of the families witnessed the death of a family member suffering namely from cancer (84%). The fact that they used the narratives in their study makes it more convincing because the narratives create an idea of speaking with people who directly experienced the problem under analysis. As the researchers have discovered, most of children were not willing to watch one of their parents dying. They were frightened with the change in their appearance, the fact that the parents were dying, the idea that they could dye in their presence, the weakness of the parent, etc (Saldinger et al. 2003). Most of children were afraid of hospitals and felt guilty for not visiting the dying parent. Apart from these details, the researchers have also discovered that most of the parents who had to take care about their dying spouse could not pay due attention to their children. Among those who still managed to do this “there was wide variation in the thoughtfulness with which parents managed traumatic exposure” (Saldinger et al. 2003, p. 173). Most of the parents understood how hard it was for children to witness the death of one of their parents, but they still were unwilling to reduce the stress the children were exposed to. This all shows that anticipatory death of a family member is extremely hard for children to go through. These two studies have proven that sudden death is less traumatic for both children and adult family members.

Depressive Disorders in Bereaved Children

There is no doubt that the death of one of the parents is stressful for a child. However, no less stressful are those situations when the parent is diagnosed with cancer or the like fatal disease. The only awareness of the parent’s disease may cause psychological disorders in a child. Such a psychological distress may further accompany the child throughout his/her adulthood. This idea is supported by a number of researchers even though “evidence for an association between childhood parental bereavement and later psycho-pathology has been contradictory” (Kranzler, Shaffer, Wasserman & Davies 1990, p. 513). The controversy consists in the environment in which children learn about the disease of one of their parents. For instance, several studies have discovered that “the quality of postloss childcare determined risk for depression in adulthood. Adults with a history of insufficient care following their bereavement were at risk, whereas those left in a stable, adequate parenting environment were at no greater risk than controls” (Kranzler et al. 1990, p. 513). Therefore, psychological health of children greatly depends on the environment maintained at home during one of the parents’ illness and after his/her death. The discussion of three articles covering the theme of depressive disorders in bereaved children will show why the home environment may lead to the development of such disorders.

The article by Kranzler et al. (2003) explores the psychological state of the preschool-aged children who have lost one of their parents. The researchers assessed the behavioral disturbance of the children who have lost a parent with that of the children from the control groups. The basic criteria that were taken into account during the assessments were self-esteem, concentration, and children’s general mood (Kranzler et al. 1990). The researchers interviewed 26 children aged 3-6 coming from 23 families. The control group consisted of the children of the same ages. The researchers measured the psychiatric status of both the groups with the help of the Child Behavior Checklist, while the surviving parent’s metal status was assessed using Beck Depression Inventory and semi-structured interviews.

It has been discovered that that the rates of disturbance in case with bereaved children were higher than those of the control group. At this, the bereaved boys exhibited higher rates of disturbances both compared to the bereaved girls and to the boys from the control group. At this, the researchers have found that age also mattered much for the development of psychological disorders. For instance, there were differences in the disturbances rates between 3- and 4-year old children from both the groups; 5- and 6-year olds have developed more symptoms of different psychological disorders. And again, in all these cases boys were more exposed to the risk of psychological disorders than girls (in all the ages). These assessments were followed by the discussion of the mediators that contributed into the development of psychological disorders among bereaved children. The study has concluded that the surviving parent’s psychiatric status, as well as the child’s attendance of the funeral and the family’s financial situation were the most significant mediators, whereas the parent’s sex, duration of the deceased parent’s illness, and social supports did not influence much the development of disturbances in bereaved children.

Similar study has been carried out by Kennedy & Lloyd-Williams (2009) in which the researchers tried to discover the nature of the distress experienced by children whose parents were diagnosed with cancer. Kennedy & Lloyd-Williams (2009) mention that one of the most widespread adaptive strategies among children is coping; it can be problem-focused, emotion-focused, and dual-focused. As for these types, problem-focused coping is “based on efforts to change some aspects of the stressor by the individual, emotion-focused coping is based on thought and actions aimed at managing the distressing emotions that the stressor causes the individual, and dual-focused involves the use of both” (Kennedy & Lloyd-Williams 2009, p. 886). As a rule, children adopt emotion-focused and dual-focused coping most often in order to cope with the parental cancer. The researchers review several studies that explored the issue of coping. They discover that, apart from coping, there also exist other strategies of adapting to the illness of a parent (this example concerns developing breast cancer in mothers, in particular):

These included carrying on as usual, acting as though they were in their mother’s shoes, tapping into group energy, and putting their mother’s illness on the table. Strategies commonly used by all ages include avoidance, maintaining normalcy, and spending more time with the family. (Kennedy & Lloyd-Williams 2009, p. 886)

Carrying out their own study, the researchers tried to define why children whose parents have cancer used to chose particular coping mechanisms. To do this, the researchers interviewed 28 children from 12 families. Most of all, they were interested in children’s response to diagnosis, mechanism of coping which they developed, changes in children’s lives after their parents have been diagnosed with cancer, and positive aspects of the situation the children found themselves in. All these issues were discussed from the perspective of children and from the perspective of parents, which gave the researchers an opportunity to evaluate the environment in which children lived after they found out about the fatal illness of one of their parents. Strange as it may seem, but most of the children found positive aspects of their situation:

Some positive aspects were also described such as learning how to care for others, being prepared for adult life, and learning to appreciate their family. The most common positive aspect described was a sense of becoming closer to family members and learning to appreciate them, being grateful for what they have. (Kennedy & Lloyd-Williams 2009, p. 890)

This all shows how much influence the parents’ diagnosis has on children. Even the youngest of them feel a desire to help, to do something to save the person they love. This being the reason, children develop coping strategies which are similar to all of them. Though these strategies can hardly be regarded as psychological disorders, they still mean that bereaved children do everything possible to overcome the distress they feel after they find out about the forthcoming death of their parent. In any way, Kennedy & Lloyd-Williams’ study shows that children might be exposed to depressive disorders due to one of their parents being diagnosed with cancer.

Finally, one more study explored the problem of disorders in bereaved children. Brent, Melhem, Donohoe & Walker (2009, p. 786) have discovered that “children of parents who died of suicide, accidental death, or sudden natural death had higher rates of new-onset depression and post-traumatic stress disorder (PTSD) than non-bereaved comparison subjects”.These researchers carried out a comparative study of bereaved and non-bereaved families to examine the psychological effect of the parental death on children. The participants were interviewed 9 months after a parent’s death and then re-interviewed a year later. The researchers used the Schedule for Affective Disorders and Schizophrenia for School-Age Children to assess psychiatric disorders in the participants. They have discovered that the rates of major depression, as well as alcohol and substance abuse, were higher in case with bereaved children. In general, the severity of symptoms was also higher in case with bereaved children. This once again proves that the death of a parent may lead to the development of psychological disorders in a child.

Communication with Bereaved Children

When a child’s parent is diagnosed with cancer, it is not always useful to inform the child about this and the peculiarities of the parent’s disease in particular. A number of studies discussing this issue have discovered that children experience even higher level of distress when, apart from knowing about their parent’s disease, they are constantly communicated with about this problem and its influence on their lives. This is why it is extremely necessary to assess the children’s needs with regards to who should inform them about their parent’s being diagnosed with advanced cancer and how this should be done. Among the nine articles under consideration, two address this issue.

Generally, children whose parents have been diagnosed with cancer are already under the risk of distress. This especially concerns children older than 10 who already perceive death as termination of life. In addition, as mentioned by Kennedy & Lloyd-Williams (2008, p. 149), “the terminal phase of a parent’s illness may be a period of greater psychological vulnerability than the period following the loss”. Most of the parents understand that their disease may be stressful for children; this being the reason, they often avoid telling them about it. Though there are a number of studies testifying to the fact that such information is harmful for the children’s psychological health, it has been proved that lack of communication may be no less stressful for children. This especially concerns older children who feel the necessity to know more about their parent’s illness. Kennedy & Lloyd-Williams (2008, p. 150) state that

… adolescents identified parents (predominantly), support groups, physicians, school and media as their main sources of information and emphasized the need for information to be specific and to be given as the illness progressed. Important information included whether mothers were going to survive, the seriousness of illness, side effects of treatment, medical facts related to illness, and information on how to help their mothers.

This is why Kennedy & Lloyd-Williams (2009) believe that it is necessary to find out the information and communication needs of children whose parents have been diagnosed with cancer. To do this, the researchers interviewed parents who have been diagnosed with cancer and their children, if any, older than 7. In whole, they interviewed 28 participants from 12 families in which one of parents had advanced cancer. Four most important themes have been identified in the course of the research; they were “the need and type of information, sources of information, communication with parents, and communication with others” (Kennedy & Lloyd-Williams 2008, p. 151). These themes have been assessed first from the child’s perspective and then from the parental one. It is interesting, that all the children who took part in the research expressed a desire to know more about the illness of their parents and what was expecting them in future. The researchers mention that some of the children “described wanting total honesty, whilst others expressed a need for their parents to filter or soften the information according to what they felt able to deal with. In some cases … the child wanted reassurance that everything would be alright” (Kennedy & Lloyd-Williams 2008, p. 151). Most of the children were interested in the nature of the disease and whether or not they will have to be tested for cancer. It has also been found out that children needed communication with parents, while communication with other people, including friends, health professional, relatives, and teachers was difficult for them, though some of the children felt the necessity to talk about the problem with somebody apart from parents and health professionals.

In contrast, Beale, Sivesind & Bruera (2004) discovered that some children are reluctant to communicate with health professionals. When communicating with children after the death of their parents they noticed that most of them were “sad, tense, and preoccupied and did not seem to connect with the interviewers” (Beale et al. 2004, p. 388). They also noted that, irrespective of how much information the children received about the illness of their parents, they seemed interested in it, as well as in everything related to the health of their ill parent. The case studies analyzed by the researchers prove that children suffering from the lack of information about their parents’ illness become aggressive and sometimes unsociable; they prefer expressing their thoughts about the parents’ illness in drawings. The analysis of these drawings has shown that older children understand the hopelessness of the situation, while the children of all the ages express a desire to help the parent and to get back his/her state to normal.

Support Programs for Children Whose Parents Have Incurable Cancer

Quite often families in which one parent has incurable cancer need support of special programs. Such programs help parents cope with the emotional problems caused by the inevitable loss of a spouse, as well as with the psychological burden placed on the child when he/she is told about the problem. Parent-children communication and relationships are strongly influenced by the fact that one of the parents has cancer. The matter is that most of the parents “find it difficult to talk with their children about cancer and that they are reluctant to have these discussions with their children because they are afraid of frightening them and of seeming to take away any sense of hope” (Bugge, Helseth & Darbyshire 2008, p. 3481). This is why support programs are necessary for such families. Bugge et al. (2008) carried out a research to find out the effectiveness of one of such programs, the Family Support Program. The researchers interviewed the participants and analyzed the interview texts qualitatively. The results of this study supported the researchers’ hypothesis because Family Support Program has indeed facilitated communication between family members, parents and their children, as well as increased the participants’ knowledge about cancer and coping with the crisis which this illness entails.

This, however, is not the only study assessing the effectiveness of the Family Support Program. In their subsequent study the researchers aimed to discover whether this program meets the needs of children whose parents have incurable cancer and how helpful this program is for children’s coping. Bugge, Helseth & Darbyshire (2008) interviewed the participants of the Family Support program to find out children’s and parents’ perceptions of the program and its meeting their needs (those of children in particular). The interviews included quite long conversations with children in which they stated whether the program was helpful: “From the child’s long story about talking alone with the health worker in the program, the condensed form was ‘I feel better now that I have talked about it’” (Bugger et al. 2008, p. 429). These interviews helped the researchers to identify some of the concerns of children with regards to their parent’s state (the parent would die, the changes in his/her condition are frightening, the parents avoid talking about the illness, etc), as well as whether the program helped them to cope with the situation. Thus, most of the children have noted, that the Family Support Program gave them confidence to discuss the illness with parents, increased their knowledge about cancer, and made them feel important in their family. Thus, according to two studies, the program was successful.

Discussion

Method Discussion

The method used in this study was a literature review. It consisted in reviewing nine different articles (mainly scholarly articles) some of which raised common themes. Summarizing the results of each of the articles has given a number of benefits for the development of the topic chosen for this paper. It gave me better understanding of the topic and allowed comparing the findings of different researchers and making conclusions from these findings. Besides, this has given me a possibility to observe differences and similarities between the studies written on one and the same topic. A number of the researchers agree in the idea that one of the parents’ being sick with cancer greatly affects the quality of the child’s life (Helseth & Ulfsaet 2003). There are three main reasons why literature review is a great method of data collection for the study on this topic.

First of all, literature review allows obtaining a holistic approach to the chosen problem area. The sources analyzed for this literature review helped to realize the effect of the parents’ cancer on their children’s psychological health. If another method was used, the data obtained would not disclose the whole essence of the issue discussed because, most likely, it would have focused on only one aspect of the problem. The articles written by numerous researchers allowed not only discovering that the children of parents diagnosed with cancer experience certain emotional problems, but helped to define the reasons of these problems. Among the most significant ones there were “inability to discuss the parent’s illness with parents; having to spend less time with friends; having to spend less time on sport and leisure activities; deterioration in schoolwork; and continuing anxiety over the parent’s illness” (Nelson, Sloper, Charlton & While 1994, p. 30). The holistic approach developed to the problem in question allowed tracing the interrelation of different aspects of this problem. This approach helped to not only evaluate the psychological disorders that children of parents sick with cancer may have, but also to examine the dependence of these disorders on the duration of the parent’s illness, on the age and gender of children, as well as parents, on how much informed the children are about the illness, and the like factors.

Secondly, literature review is a great method for collecting the data on the problem under consideration because it allows grouping the studies according to the themes raised in them. Four major common themes have been found in the articles used for the literature review. They were anticipated and sudden death, depressive disorders in bereaved children, communication with bereaved children, and support programs for children whose parents have cancer. Among these themes, several other themes could be distinguished. For instance, most of the articles dealt with the issue of coping. Not all the articles focused on emotion-focused or dual-focused coping, as well as not all of them described coping in adolescents and young adults (Compas, Worsham & Sydney 1996); however, the discussion of this issue was present in most of the articles. Moreover, different types of coping, especially in case with children of mothers having breast cancer, have been outlined. Other researchers, apart from those whose articles have been discussed, also agree on these types. As stated by Issel, Ersek & Lewis (1990) who explored coping in children whose mothers had breast cancer, the children “acted as though they were in her shoes, carried on business as usual, tapped into group energy, and put her illness on the table” (p. 5). Thus, grouping the studies according to their themes allowed considering a particular aspect of the problem in more detail.

Finally, collecting the data by means of the method used helped to perform critical evaluation of the sources relevant to the topic. For instance, it was discovered that, indeed, though a number of studies discuss the issue of the quality of children’s life during and after their parent’s fatal illness, “little attention has been paid to what or how young people should be told about their parent’s cancer diagnosis” (Finch & Gibson 2009, p. 213). As discovered from the articles, this has a number of reasons. In most of the cases, parents avoid talking to their children about cancer because they wish to protect them “from the reality of a parent’s imminent death” (Longfield & Warnick 2009). Writing a literature review using the abovementioned nine articles gave a possibility to evaluate which of the studies were successful and how accurately the research was carried out in them. This gave a great idea not only about the topic under consideration, but about the research performed on this topic, as well as the value of this research. Therefore, the method of data collection used in this paper was quite an effective one because it helped to consider different aspects of this topic, evaluate the interrelation of these aspects, and realize the important of the research carried out in the problem area in question.

Results Discussion

With regards to the results obtained from the studies discussed above, an answer to the main question of this research can be given. Using Travelbee’s theory as a conceptual framework, it is possible to state that improved communication is the best way to treat children whose parents died or are dying from incurable cancer. The results of the research presented in nine articles, irrespective of the issues they raise, all boil down to the fact that bereaved children suffer from the lack of attention and communication which can be provided by nurses (because the remaining parent is often unable to take care about the child).

For instance, in case with the issue of anticipated death, children are subjected to suffering and psychological pain. According to Travelbee’s theory, proper nursing can reduce this suffering and help the bereaved children cope with the experience of illness (Meleis 2006). Such nursing is especially effective if a nurse him/herself has experienced similar losses and can share this experience with the bereaved children. Personal experience can help to evoke trust and even compassion in the bereaved child, adding this child a feeling that his/her problem is not unique. Taking into account the conceptual framework of this study, it can be stated that care needs of children whose parents have incurable cancer limit to good communication with the nurse who, desirably, has personal experience to share with these children. This can help to improve the psychological state of the child, especially the one who encounters the anticipated death of a parent, which, as the studies have shown, is more traumatic than the sudden death.

Discussing the results of the studies raising the issue of the depressive disorders in bereaved children, the use of Travelbee’s theory can also be quite helpful. Travelbee’s main purpose was to discover the essence of the relations between nurses and patients (Meleis 2006). In case with the bereaved children, this essence is good communication. If the nurse will be able to establish proper contact with the child whose parent has incurable cancer, then his/her relations with this child can improve. Consequently, the nurse’s chances to help the child fight with the depressive disorder will be higher. The matter is that the child will be able to overcome the depressive disorder as soon as he/she becomes open to the nurse. There is no way establishing good patient-nurse relationship if a child is unwilling to communicate with the nurse. Similarly, there is no way helping the child to deal with the depressive disorder if there is no communication between a child and a nurse. The nurse should become involved with the child’s problem, which will help him/her to keep the channels of communication open and to fulfill the purpose of nursing (Meleis 2006). Thus, good nurse-patient relations can help the bereaved child cope with the depressive disorders.

One more issue raised by the studies has a direct relation to Travelbee’s theory. A number of researchers discovered in their studies that communication is vital for the bereaved children. For instance, Kennedy & Lloyd-Williams’ (2008) study has shown that children of parents with incurable cancer are often open to communication and wish to receive the information about their sick parent’s state of health. This is why, within Travelbee’s theory, the main objective of the nurse should be providing children with this information (to the extent which the nurse considers necessary). As stated by Travelbee, there are five main phases in which nurse-patient relations are established. They are “1. Phase of original encounter … 2. Phase of emerging identities … 3. Phase of empathy … 4. Phase of sympathy … 5. Phase of rapport” (Meleis 2006, p. 366). After reaching the fifth stage, the nurse and the patient reach the highest level of communication at which perceiving and sharing of information takes place. Therefore, establishing good nurse-patient relationships and, correspondingly, meeting the bereaved children’s care needs is possible only through ensuring that there is proper level of communication between a nurse and a patient.

Finally, discussing the last issue raised in the studies, it should be mentioned that meeting the care needs of children whose parents have incurable cancer is the primary objective of the support programs. With regards to the Travelbee’s theory, support programs are there to establish nurse-patient relations and improve the communication between nurses and bereaved children. Basically, communication and support programs have the same purposes; they both aim “to assist individuals and families, to prevent and cope with the experience of illness and suffering and, if necessary, to assist them to find meaning in these experiences” (Meleis 2006, p. 367). Thus, if communication remains the key tool for a nurse taking part in the support programs, it will be possible for this nurse to establish good relations with children, to help them cope with the suffering which the death or illness of the parent has entailed, and to fulfill his/her main purpose of nursing.

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