Adolescents living with a parent with advanced cancer: a review of the literature

Need to maintain normalcy

Parents worked hard to maintain normalcy in their family's lives, especially their children's social activities 25, 26, 28, 29, 32. Yet, severe fatigue and side effects from cancer treatments were described as impediments to maintaining stability, normalcy, and daily routines 26, 29. Mothers in particular described a sense of responsibility to their children to maintain normal household routines despite their side effects 26. Women felt keeping a routine and structure in their children's lives would make children feel safe and grounded 28. Some parents believed successfully maintaining normalcy and not communicating about the illness would protect their children from the emotional impact of cancer 32.

Parenting became a priority

The sicker parents became, the more parenting became a chief concern in their lives 23. As one woman shared, ‘I used to want a lot of things. Now, all I want is to see my children grow up’ 26. Whether parents attempted to be better listeners, spend more time with their children, or create memories to sustain long-term attachment, parents with an advanced cancer diagnosis felt compelled to be good parents. Sigal et al. 23 examined the mother–child relationship between women with early-stage breast cancer and women with metastasized breast cancer with surprising results. They found that the sicker mothers and their children were coping better with the illness, with reports of less poor parenting and fewer behavioral problems in their children 23. The authors suggested that once mothers realize they may die, they begin maximizing the time they have left with their children. Moreover, once children comprehend the seriousness of their parent's condition, they may attempt to protect their parents by controlling any disruptive behavior. They concluded that parents with advanced cancer recognize the life-limiting nature of their illness and in turn make parenting and their relationship with their children a priority in their lives 23.

This idea was also supported by the qualitative studies. Houldin and Lewis 29 interviewed 14 patients with Stage IV colorectal cancer. Parents shared how they were forced to ‘rethink their parenting’ by not only trying to spend more time with their children but even ‘listening to them more’. Sheehan and Draucker 27 created an explanatory model outlining interaction patterns between parents with advanced cancer and their adolescent children. Using a constructionist grounded theory approach, analysis of their data revealed the core variable, Making the Most of the Time We Have Left Together. The study's explanatory model depicts the adolescents and ill parents' responses to the realization that their time together was limited by the parent's impending death. Ultimately, parenting their adolescent well was a critical concern, even for the very ill parent. Their model reflects a dynamic process by which families continuously adjust their relationships in the face of advanced cancer. O'Callaghan and colleagues 33 analyzed the lyrics of songs written by parents with metastatic cancer to their children. They found that parents used these songs as a way to facilitate their child's sense of connectedness to the hospitalized parent and as a way to ensure ongoing attachment to them after death 33.

Drawing on ethnographic fieldwork at a support group for women with metastatic cancer, Bell and Ristovski-Slijepcevic 26 explored the relationship between mothering and living with advanced cancer. Mothering for these women became ‘a race against time’ as they attempted to ‘cram a lifetime worth of parenting into a few short years’ by making every effort to create memories 26.

Talking with children about advanced cancer

Parents expressed concerns about ways to talk with their children about their advanced cancer 25, 28, 29, 32. Communication is an important factor to help children adjust to parental cancer. Yet, parents struggled with the amount of information, timing, and language used to explain an advanced disease 25, 28, 29. Mothers wondered if children would understand the implications of a metastatic disease 25 and also felt the need to maintain hope while still being honest with their children 28.

The consensus was that parents did not receive guidance or support from healthcare professionals on how to talk to their children about advanced cancer 25, 28, 32. Parents felt their healthcare practitioners avoided discussions about advanced cancer or death 28. Parents were left to deal with this issue alone. Therefore, many failed to initiate discussions about cancer with their children 28. Some parents were reluctant to discuss the illness with their children, believing that telling too many details about their cancer would negatively affect their children 29, 32.

When women did find parenting resources for cancer, they reported that the materials were mostly aimed at early-stage cancer. Women reported depending on personal experiences or experiences of people they knew for ideas on how best to communicate about cancer to their children 26, 28. When recounting these experiences, women commented on the negative emotions they or their friends felt when their own parents' cancer was not disclosed to them or was purposely obscured. These findings suggest that parents need help in communicating with their children about advanced cancer in order to maintain trust in the parent–child relationship.

Worrying about emotional impact on children

Parents were often concerned about the emotional impact cancer had on their children 25, 26, 28, 33. Some parents worried less about the impact of the disease on themselves, than about its effect on their family and children 29. One study revealed a consensus upon a ‘hierarchy of suffering’. This hierarchy was an oftentimes unspoken agreement that living with advanced cancer was far worse when the women had dependent children 26. Most parents described their children as being upset by the news of their cancer diagnosis. They described their children's distress such as crying uncontrollably or asking ‘how many sleeps’ until the parent died. Parents also reported concerns about their family, especially their children, watching their physical deterioration 25, 26.

Psychosocial impact

Quantitative studies of the impact of parental advanced cancer on adolescents are rare. However, there are several studies that included parents with advanced cancer in their samples. Although the results of these studies are aggregated across all stages of cancer, they have identified factors related to children's adjustment that may be important to consider when examining families dealing with advanced cancer. For instance, recurrence of parental cancer has been associated with high rates of distress and stress response symptoms (SRS) in adolescents 34, 35. Studies have found that the severity of the parent's physical impairment and the child's perception of the illness as serious are both factors strongly related to greater distress in adolescents 36-38. It can be inferred from these studies that adolescents experiencing a parent with advanced cancer may have similar psychosocial outcomes.

Siegel and colleagues 22 found that children whose parents were receiving treatment for advanced cancer reported significantly higher levels of depression, anxiety, and lower self-esteem than peers. In addition, parents reported higher behavioral problems and lower social competence in the children with a terminal parent 22. In a follow-up study, Siegel et al. 16 found that children's levels of depression and anxiety prior to their parent's death were significantly higher than it was 7–12 months after the loss of their parent. This suggests that the terminal phase of a parent's illness may in fact be a period of more distress than after the actual loss. A recent study by Rainville et al. 21 found that adolescents living with a parent's advanced cancer showed significantly higher levels of distress and depression compared with the general population. Upon further analysis, they discovered age effects on their results with early adolescence (12 to 14 years) showing no significant differences in measures when compared with the same age group of peers. However, late adolescents (15 to 18 years) continued to show significant differences in their levels of distress, anxiety, and irritability compared with their peers 21. This result was reiterated in another study that found older age of adolescent was associated with lower health-related quality of life (HRQol) 24. Surprisingly, the same study found that adolescents of parents with advanced cancer reported significantly less behavioral and emotional problems and higher HRQol when compared with adolescents whose parents were in other disease stages. The authors speculate that these results may be due to the effort made by adolescents to ‘ward off potentially overwhelming emotions’, conceal their thoughts, and control negative behaviors in order to protect their parents during a distressing period 24.

It has been shown that depressive mood or negative affect in the parent with cancer is associated with emotional and behavioral problems in children 23. Further findings show that negative parenting behaviors (as assessed by a parenting behaviors questionnaire) are associated with negative child outcomes such as increased externalizing symptoms 23. Behavioral problems were also reported in children by parents who did not have open communication styles. However, these parents pointed to the adolescents' age and not the cancer as the reason for the behavioral problem 32.

The qualitative studies reviewed provide further insight and context to these results. Adolescents reported the knowledge that their parent's cancer had spread or was incurable as very distressing, upsetting, and heartbreaking 10, 32, 39. They reported feelings of intense sadness and guilt accompanied by concerns about impending parental death, as well as concerns for their own health 10, 32, 39. These studies bring to light the adolescents' ability to empathize with their ill parent and show a deep level of awareness of the ramifications of advanced cancer.

Parent–child relationships

There is evidence of a relationship between parenting quality and child and adolescent adjustment to a parent's illness 23. The significance of the adolescents' relationship with their parent was reported by many of the adolescents interviewed. A positive relationship before the diagnosis helped adolescents adapt to the changes brought about by the illness 10. Open communication between the parent and child led to more effective coping and also seemed to strengthen the parent–child relationship 32. Children and adolescents often described a consequence of the illness as spending more time with their parent and ‘a sense of becoming closer to their family’ 10, 27, 32. Sheehan and Draucker 27 found that adolescents spent more time together with family and extended their time together by developing strategies to maintain their relationship after the parent's death. These findings imply that warm and supportive parenting may serve as a protective factor for these children and adolescents.

Coping strategies

Lazarus 40 defines coping as ‘ongoing cognitive and behavioral efforts to manage specific external demands that are appraised as taxing or exceeding the resources of the person’. Emotion-focused coping is the ‘regulation of stressful emotions’, and problem-focused coping is ‘the management or alteration of the person-environment relationship that is the source of the stress’ 40, 41. In other words, emotion-focused coping is when the child attempts to modify their own reactions to their parent's cancer, and problem-focused coping is when the child makes attempts to modify the cancer or stressors related to the experience 42. The literature shows that children and adolescents who have a parent with advanced cancer utilize one or more of these coping styles.

Two studies specifically looked at children and adolescents' coping styles when faced with a parent's advanced cancer 10, 32. They found that both emotion-focused and problem-focused strategies were employed by adolescents faced with a parent's advanced cancer. Kennedy et al. 32 found that the two most common coping strategies used were an emotion-focused coping strategy, distraction to maintain normalcy in their daily lives, and the problem-focused strategy of talking to someone outside of the family about the cancer. Christ et al. 10 described common ways of coping for adolescents who had a parent with advanced disease including ‘intellectual defenses, search for understanding, and ability to seek help’. Adolescents were found to be aggressive in seeking information about the disease from various sources (parent, medical staff, books, etc.). Many adolescents desired more communication about the illness, either factual or emotional 32, 39, 43. At times, they expressed a desire to talk to somebody outside of the family about their concerns in order to lessen the burden on their parents 32, 43. Adolescents tried to obtain meaning from the cancer experience and the role it played in their lives and their family 10, 27. Finally, adolescents seemed to cope by eliciting social support from peers, parents, and other adults and professionals 10, 32.

Caregiving

Although parents described their efforts to maintain normal daily routines for their children, many adolescents reported increased demands to help with household chores 10, 32, 39. A majority of children described becoming a caretaker for their ill parent 39. Adolescents would run errands and try to take care of family needs in hopes of ‘making it better for the ill parent’ 27. For some, the added family demands became stressful because it interfered with their regular activities 10, 32, but many adolescents welcomed the ability to help as a way to feel better about the situation 27, 32.

Positive gains

The prevalence of positive well-being is rarely addressed in the literature on parental cancer. But, in the case of advanced cancer, positive aspects of the cancer experience seem to consistently emerge from the findings. Many of these studies have unexpectedly found evidence of resilience or protective factors that have led to positive outcomes for these families 24. Sheehan and Draucker 27 found that parents and adolescents spent more time together, increased intimacy, and continued to foster a sense of attachment after the parent's death. Kennedy et al. 32 found that parents and children reported a greater sense of appreciation for their family and a sense of ‘being grateful for what they have’. As one adolescent shared, ‘(Cancer) awakens your love for someone’ 10. Many adolescents seemed to search for meaning in the cancer experience as a way to cope and maintain hope 10, 27. Parents also reported witnessing positive outcomes in their children such as increased independence, learning to prioritize, and improvements in relationships with family members 27, 32.

Quantitative study designs

The majority of these studies were cross-sectional, with only one study using a longitudinal design 16. Rubin and Babbie 44 explain how cross-sectional designs have an inherent problem. In general, they seek to understand causal relationships that are part of processes that take place over time. However, their findings are determined by an observation made at a single time point 44. As Lewis 45 argues, ‘dynamic change models are needed in future studies to better examine the child or adolescent's response to parental cancer’. Although cross-sectional designs do not allow us to make causal inferences, they do provide valuable insights as to which variables are related to each other and should be examined more closely in further research. Longitudinal research is particularly important in this research area in order to assess which stage of the illness may be most critical for intervention and to examine the long-term consequences of advanced cancer on these emerging adults.

Qualitative studies

The concept of quality or rigor in qualitative studies has been an issue of controversy for some time 47. Armour et al. 48 described rigor as ‘the degree to which researchers hold themselves to standards of inquiry that address challenges to the credibility of the studies findings’ (p. 102). Therefore, this review evaluated methodological thoroughness as well as strategies used to ensure trustworthiness.

The participants interviewed were overwhelmingly parents (eight studies), and only one study focused solely on the adolescents' experience. This lack of studies focused on the adolescents' perspective means there is still much to learn about the adolescents' experience and how they manage their lives while living with a parent's advanced cancer 45. The credibility of some of the qualitative studies was also limited by inadequate descriptions of their methods of analysis 10, 25, 28, 39.

Intervention studies

The relative absence of intervention studies makes it difficult to draw conclusions about interventions for children and adolescents facing a parent's advanced cancer. The tendency in the literature has been to describe rather than discover effective methods to intervene 51. The results of the four intervention studies reviewed may be clinically significant and show promise that providing support for parenthood and children during the terminal phase of illness may provide psychological well-being for families facing parental death from cancer. More importantly, these studies show interventions do not cause harm. Nevertheless, the gains provided by these studies are not convincing from the perspective of intervention research because of study designs and various limitations. One of the primary limitations was the lack of a control group in the studies, greatly decreasing the reliability of the intervention effect. Lack of formal instruments was a significant threat to validity for all studies. Internal validity was compromised in all the studies in varying degrees. Selection was a significant threat in that all the samples were composed of volunteer participants, potentially biasing toward more positive outcomes. Also, future studies are needed using experimental designs that control the independent variable to validate the causal inferences of newly developed interventions and to ensure outcomes are trustworthy. Despite the methodological limitations, the reviewed studies lend support to the benefits of psychosocial programs in helping children adapt to advanced parental cancer: promoting positive parenting, decreasing misconceptions about the illness, providing opportunities for expressing feelings, increasing family communication, and promoting positive coping. Researchers need to continue in their interventional efforts and evaluative research in order to satisfy the current lack of evidence to guide clinical practice.