The unexpected roles we are given
by Franziska König-Paratore
This introductory article is part of a series of reflections on how the diagnosis of a parent with a life-threatening illness affects their children and how families cope with the challenges of adjusting to the new situation. The articles offer insights into the author’s personal account and are supposed to help others who are on a similar journey to reflect on their own experience.
Shock to the system
Whenever a person is diagnosed with a life-threatening and/or chronic disease, the fear and shock resulting from such news affects the whole system. That is, any patient is part of a larger network. We all have a (chosen) family, friends, colleagues, neighbors as well as doctors. Often, the people in this network accompany the patient as they notice symptoms, seek medical help, undergo tests, are confronted with diagnoses and receive treatment. In addition to the physical, psychological and economic impact of a severe illness on a patient’s life, the lives of family members, friends and colleagues are turned upside down. Suddenly, everyone who is close to the patient experiences their own challenges and may assume various roles as caretakers they never expected to be given.
Throughout our lives we are given many unexpected roles and caring for a parent with a chronic illness can be one of them. It is therefore vital that we understand how the diagnosis of a parent with a life-threatening disease affects their children. How can patients’ children, both young and old, better cope with the emotional stress this new situation may cause?
Communication, communication, communication
I have experienced myself that a diagnosis of a loved one with a life-threatening illness affects you differently as a young child. The resources available to you for coping with the situation are quite different from the possibilities you have as an adult. That is, the role you can or want to play as an adult sharply differs from the role you are given as a child when your parents are faced with a life-threatening disease.
In 1994, my mother was diagnosed with late stage 3 breast cancer. I was 10 years old, growing up in Berlin, Germany, during the time of transition after 1989. As a child and in the aftermath of my mother’s diagnosis, I felt very helpless and confused. My parents wanted to protect me in addition to coping with the new situation, including the economic challenges my mother’s illness caused. In hindsight, for years, I have felt guilty and shame because I went to a friend’s house after school many times so my mom could go to the hospital for treatment (she was enrolled in a clinical trial). The same year of her diagnosis, my parents sent me to a boarding school where I stayed during the time she was treated. Only much later did I realize that these decisions were made by my parents to better cope with the situation. As former East German citizens, they were overwhelmed with the general insecurities of the 1990s and economic difficulties. My mother had to take care of herself as well as ensure that I was supervised while my father was working full-time. However, I would have liked to be included more and informed about my mother’s illness and diagnosis.
In fact, research spanning the health and social sciences shows that children experience their own unique challenges and develop specific needs in such a situation (Faccio et al. 2018., Hauken et al. 2018, Inhestern et al. 2021, Marshal et al. 2021, Walczak et al. 2018). A study published in The Lancet concludes that “children consistently report wanting prompt, clear, and simple information about their parent’s diagnosis, planned treatment, and prognosis.” The study further reports that “the risk of creating anxiety is outweighed by children’s desire for information” (Dalton et al. 2019). Parents need the right tools to communicate with their child and provide information about the parent’s health. But how do you communicate effectively? Help children understand the situation and implications of a life-threatening illness. For example, explain the parent’s frequent and long hospital visits, treatment-related ailments, or changes in the family routine, such as after-school activities. Like the rest of the family, the child worries about the future and having information can help to alleviate anxiety and uncertainty. This has to be done with the appropriate language and according to the child’s developmental level (more info).
The second time around, I was living in a different country, far away from my parents. I was 31 years old, enjoying my independence and a life I had built abroad. I do not remember the phone call when my mother told me that after five years of searching for medical help, she was diagnosed with pulmonary hypertension (more info). She was very frightened. I vividly remember the shock I experienced. For a week, the world around me was muted, as if I had cotton swabs sticking in my ears. I moved at a glacial pace and my body seemed to function and do all the things that were necessary, but I was not really present but performing the tasks that were expected of me.
Should I stay or should I go?
In my mother’s case, there was no underlying disease or anything that could explain the outbreak of this rare disease. She was categorized as idiopathic and again enrolled in a clinical trial. It is much to her persistence that she is now living with this chronic disease and receiving treatment. But what did this mean for my 31-year-old self? I was about to enter a master’s program with the hopes of developing a PhD proposal. I felt like I was facing the same dilemma I had encountered 21 years earlier. How do I gather enough information to plan my future while considering my mother’s prognosis? By the time my mother had called me, she had already known about her condition for some time. Sure enough, the guilt crept up again, but this time I was much older, able to decide on my own whether I wanted to support my parents by being more physically present in their lives. My parents, however, pressed me on staying abroad. My mother said, “No, you should stay in New York City, enjoy the summer and start your program. This is a chance of a lifetime!” So I decided to stay abroad, for now.
Five years later, I moved back to Berlin, Germany. Even as an adult, you have to be aware of the challenges that a parent’s disease poses and how it may affect your life. I took the time to gather the economic resources, obtain the emotional stability, start open communication with my parents as well as establish mutual respect and sometimes even engage in disputes or negotiation before I was able to support those people in my life that are living with a chronic and life-threatening disease.
We are sitting in the same boat
Once I moved back to Berlin, one important step was done, but the hard part of establishing good communication with my parents was very difficult. What had changed? I was an adult and demanded more information and offered my help, whether it was running errands or driving the car to the hospital. Initially, my parents did not take my help. I felt like I had to force my support on my parents. When my mother did not take my offers, I felt hurt and disrespected. I was not the small child anymore that needed to be shielded from bad news. I broke off contact with my parents for six months leaving them angry and confused. But I also needed this time to figure out why I felt hurt, frustrated and disrespected. How do I communicate that I did not want to be treated like a 10-year-old child? My mother, on the other hand, was dealing with her own feelings of anxiety. In the end, I realized, we are sitting in the same boat and together we have to learn how to let each other take the wheel once in a while. Once I was ready to talk to my parents again, I proposed to meet in a neutral space, not in our homes, to express my concerns and expectations. That was a start, but the conversations are ongoing. I learned that it is a constant battle between taking care of my own mental health, demanding information or providing help, and doing the best I can to understand my mother’s wishes and needs.
Dalton, L, Rapa E, Ziebland S, Rochat T, Kelly B, Hanington L, Bland R, Yousafzai A, Stein A. Communication with children and adolescents about the diagnosis of a life-threatening condition in their parent. The Lancet (2019) 393 (10176): 1164–1176. Doi: 10.1016/S0140–6736(18)33202–1.
Faccio F, Ferrari F, Pravettoni G. When a parent has cancer: how does it impact children’s psychosocial functioning? A systematic review. Eur J Cancer Care. (2018) 27 (6): e12895. Doi: 10.1111/ecc.12895.
Hauken MA, Senneseth M, Dyregrov A, Dyregrov K. Anxiety and the quality of life of children living with parental cancer. Cancer Nurs. (2018) 41 (1): E19–27. doi: 10.1097/NCC.0000000000000467.
Inhestern L, Johannsen L, Bergelt C, Families Affected by Parental Cancer: Quality of Life, Impact on Children and Psychosocial Care Needs. Frontiers in Psychiatry (2021) 12: :765327. Doi: 10.3389/fpsyt.2021.765327.
Marshall S, Fearnley R, Bristowe K, Harding R. The perspectives of children and young people affected by parental life-limiting illness: An integrative review and thematic synthesis. Palliative Medicine (2021) 35 (2): 246–260. Doi: 10.1177/0269216320967590.
Walczak A, McDonald F, Patterson P, Dobinson K, Allison K. How does parental cancer affect adolescent and young adult offspring? a systematic review. Int J Nurs Stud. (2018) 77: 54–80. Doi: 10.1016/j.ijnurstu.2017.08.017.