My daughter was thirteen when my husband died of bladder cancer. When he was first diagnosed 4 years prior to his death, we were forthright with her, explaining his diagnosis, telling her what was told to us, namely that the doctors felt it was very treatable. As an oncology nurse, I had seen firsthand some of the negative sequelae of nontruth telling to children, of hiding the reality of a parent’s illness in the effort to “spare them” from the sadness of bad news. Hence I did not want to choose the style of nondisclosure in thinking about my daughter’s coping needs.
As my husband’s cancer advanced, it became evident that the urologist’s original prediction would not be his reality. I talked to my daughter, explaining what was happening, all with the best intentions of including her in what was transpiring. I worried that a sense of isolation would be worse than knowing the truth. I emphasized our changing goals of comfort and quality time with her dad rather than cure. She seemed to understand this and showed no behavioral or emotional signs of extreme turmoil. I remember thinking at the time that it seemed I was doing the right thing.
Seventeen years after his death, I still worry about how I handled things. At the time of his ongoing sequential metastases, I was consumed with the demands of my husband’s care and trying to maintain an income for our family. Knowing I was stretched thin, I said “yes” to my sister-in-law who offered to stay with us. I asked her to focus on my daughter’s support needs as I was stretched thin working and being my husband’s primary caregiver. My sister-in-law ultimately was there for my daughter, a constant physical and emotional presence, as was the hospice social worker. The first year after his death, there were no blatant negative repercussions that I observed.
However, this all changed in year two when what must have been percolating under the surface erupted with a vengeance. Her emotional trauma was severe, exhibited by behavioral acting out and emotional suffering. During this time I frantically kept recalling what I did and could have done differently for my 13-year-old vulnerable daughter. Even in the absence of outward signs of problems, why did I assume a 13-year-old could deal with this major loss in her life?
My personal experience has prompted me to be increasingly sensitive to children’s issues of loss. All children, including grandchildren, often are relegated to the sidelines of cancer support offerings. We often assume their silence equivocates emotional stability. Yet this often is a major misperception.
Teenagers and adolescents require special prompting to give them the opportunity to reveal their inner turmoil that often remains unarticulated. Just think about our difficulty as adults revealing our inner feelings. Multiply that ten-fold in the young, unskilled, and unprepared teenager. Four recent publications were enlightening to me as adolescent coping when a parent has cancer was addressed.
There is a paucity of research on adolescents coping with advanced cancer in a parent.1 Yet it is estimated that nearly 3 million children in the United States are living with a parent who has cancer and close to 55,000 experience a parental death yearly.2
Phillips3 interviewed ten adolescents between the ages of 14 and 17 years to inquire about their experiences (for those interested in researching this population, an excellent table of the interview questions is included in the publication). Four themes were identified: life interrupted, being there, managing emotions, and positives prevail. Within these themes some interesting points were raised.
These children talked about the unavailability of both the well and ill parent. They were especially aware of the degree of symptom distress the ill parent was experiencing. It was important for the children to believe they were contributing to their family’s well-being by helping out and “being a good kid.” They felt parents’ attempts to protect them by not sharing information was detrimental to their coping while social support from family and friends was vital. Of note was the author’s reminder that having a parent with advanced cancer is especially challenging for adolescents as it can subvert their normal developmental growth. Adolescents are typically evolving their sense of self and striving for increased autonomy. When a parent has advanced cancer, they may feel a sense of responsibility to their parents and to the family and not feel comfortable separating.
Research about communication in families of adult parents has predominantly focused on the parents rather than the children. A second report using the Swedish Death Registry, described how researchers were able to identify children between the ages of 13 and 16 years when their parent died from cancer.4
A total of 610 participants completed a 27-item questionnaire developed from semi-structured interviews derived from a sample of bereaved adolescents. Major conclusions included the following. Nearly all the participants (98%) stated that teenage children should be informed when their parent’s death was imminent. Up to a few hours before the parent’s death, 43% stated they were not aware of the nearness of their parents dying. There was a general trend of increasing risk for an adolescent not being told about a parents’ imminent death among teenagers whose parent was diagnosed less than 2 years prior. Most of the children were informed of their parent’s approaching death by their well parent. The researchers recommended that professional support be offered to parents about who, when, what, and how to talk with children about a parents advanced malignancy.
A literature review on the well-being of children impacted by a parent with cancer identified 49 studied for consideration.5 A thematic analysis resulted in the delineation of five themes: impact of cancer, communication, coping strategies, parenting factors mediating impact, and support services. Three major elements prevailed within these themes. Daughters appeared to experience worsened mental health, parents underestimated the impact cancer had on their adolescent, and parent-child communication was key in supporting children, namely having an ongoing open dialogue.
Finally, Australian and New Zealand researchers outlined their protocol for a novel prevention-based support initiative targeting the mental health needs of young people (ages 14 to 22 years) whose parent has cancer.6 The program—Truce—is a 7-week face-to-face group intervention that emphasizes growth and strengths within the realm of positive psychology. It provides proactive emotional support rather than wait for pathology to evolve.
Based on the ACT (Acceptance and Commitment Therapy) model, Truce teaches psychological flexibility, letting go of destructive attempts to control feelings, and the elimination of unhelpful thoughts. The experimental design of Truce will ultimately test its efficacy on 130 young people with cancer as compared to a control group with specific measures overall coping, depression, well-being, and family relationships being evaluated. Noted strengths of this program include its basis on the ACT model with proven empirical evidence supporting its efficacy, inclusion of peer-to-peer interaction, and its family systems approach.
Adolescence represents a highly vulnerable time in one’s developmental evolution and the inclusion of a parent’s cancer within this paradigm requires us to be especially attentive. While we focus on our patients, we must remain cognizant of these young bystanders who need support. As cancer is increasingly realized as a family disease, those most vulnerable require special attention.
- Phillips F. Adolescents living with a parent with advanced cancer: A review of the literature. Psychooncology. 2014 Dec;23(12):1323-39.
- Weaver KE, Rowland JH, Alfano CM, McNeel TS. Parental cancer and the family: a population-based estimate of the number of US cancer survivors residing with their minor children. Cancer. 2010 Sep 15;116(18):4395-401.
- Phillips F. The experience of adolescents who have a parent with advanced cancer: A phenomenological inquiry. Palliat Support Care. 2015 Aug;13(4):1057-69.
- Bylund-Grenklo T, Kreicbergs U, Uggla C, et al. Teenagers want to be told when a parent’s death is near: A nationwide study of cancer-bereaved youths’ opinions and experiences. Acta Oncol. 2015 Jun;54(6):944-50.
- Morris J, Martini A, Preen D. The well-being of children impacted by a parent with cancer: An integrative review. Support Care Cancer. 2016 Jul;24(7):3235-51.
- Patterson P, McDonald FEJ, Ciarrochi J, et al. A study protocol for Truce: A pragmatic controlled trial of a seven-week acceptance and commitment therapy program for young people who have a parent with cancer. BMC Psychol. 2015; 3(1): 31.