Pediatric Oncology: Diagnosis And Prognosis Communication
Overview
When a child is diagnosed with cancer, it is an incredibly difficult situation for everyone in the family, and the parents especially have a hard time understanding the complicated details of the diagnosis and outcome. They usually want doctors to be honest and transparent, though this is a complex and challenging job for medical professionals.
Parents may feel a range of emotions, including vulnerability, powerlessness, anger, anxiousness, and fear, when they receive bad news about their child’s health. This news can be difficult for parents to understand and process; a study showed that nearly 10% of parents reported being unable to understand the information about their child’s incurable cancer at all, and 20% only to some degree.
Healthcare professionals often struggle with end-of-life communication with families, as pediatric oncologists feel distressed and anguish at having to deliver bad news to the parents of children with cancer despite having been trained to cure. Though parents are often supportive of their children’s involvement in their care, they may not wish for clinicians to speak to the child about death. This is a source of tension for medical practitioners and an ethical dilemma in pediatric oncology and has been found to be morally taxing for those in the healthcare field.
The Study
This study examines how mothers and fathers who have lost a child to cancer recall being informed of the diagnosis, as well as when the disease was determined to be incurable.
Gaining more information about how parents communicate with healthcare professionals when their child is diagnosed with cancer and when their child’s illness is no longer curable is important. This information can help to facilitate conversations between parents and medical staff, as well as conversations between family members.
Furthermore, this empirical knowledge can be used to develop and assess new approaches to communication. This study is an exploration of what bereaved mothers and fathers have to say about their experience of communication when their child was diagnosed with cancer and when their illness became incurable.
Methods
The Swedish population-based survey of 2016 examined the reports of 135 mothers and 97 fathers who had lost a child to cancer 1–5 years prior, focusing on the communication they had concerning their child’s sickness.
The study participants were parents in Sweden whose children had passed away due to cancer between 1 and 5 years prior. To be included in the study, the parents had to have sufficient knowledge of Swedish to be able to answer questions and the child who had died had to have been between the ages of 0 and 24 and have been diagnosed with cancer between 2010 and 2015. The participants were identified through the Swedish Childhood Cancer Registry, the Cause of Death Registry, and the Swedish Population Register at the Swedish Tax Agency.
How Data Were Collected
The research group sent an information letter to 530 eligible parents, describing the purpose of the study. Two weeks later, those parents who had not contacted the researchers were called to ask for consent to take part.
If a parent didn’t have a listed phone number, a request was sent via post for them to get in touch. After consenting to participate, the parents were sent a questionnaire with a prepaid envelope for them to return.
A follow-up call was made to those who hadn’t responded after a few weeks, without putting pressure on them. Ultimately, out of the 373 who agreed to participate, 232 returned the questionnaire.
The Survey
The survey investigated the various aspects of the bereaved parents’ lives, including the parents’ experiences of their child’s illness and death, their psychological health, and extended grief up to five years afterward. The questions were checked and approved through face-to-face interviews with cancer-bereaved parents. The results of the study have been published in other publications.
Analysis
Questionnaires were each assigned a number according to the respondent’s ID and were deemed acceptable if they had less than 10% incomplete responses.
Descriptive statistical analysis (including frequency, percentage, mean, standard deviation, median, and range) was run on the IBM SPSS Statistics for Windows version 22 (IBM Corp.) to examine general characteristics of the deceased children and parents, as well as the parent’s responses to the items.
The Wilcoxon signed-rank test, a non-parametric paired t-test, was used to determine if there were any differences between mothers and fathers in terms of marital status and occupation, with the significance level set to < 0.05.
Results
Most parents, especially mothers, are generally given information when their child’s illness becomes incurable. According to parents’ reports, 87% of children are told their diagnosis and 44% of the children are told its prognosis. Fathers are informed to a lesser degree than mothers.
Results showed that 50% of parents reported receiving the news that their child had cancer together with their other parent and the child. Of the cases, 12% reported that one of the parents was alone with the child when they received the diagnosis.
Mothers were more often alone with their children when they got the news than fathers. Additionally, 13% of the parents said their child never received the information that they had cancer; this group was composed of 22 children, with an equal number of males and females. The average age of these children was 2.6 years, with a range of 0-15.
The responses given by parents when asked how long it took before they found out that their child’s cancer was incurable ranged from within one day to over one year. Half of the parents agreed that the communication of this information was handled respectfully, and 64% agreed that they understood the information. Additionally, 50% of the mothers and 56% of the fathers stated that they believed healthcare professionals had done everything possible to try and cure the child; however, 6% of the parents completely disagreed with this statement.
Final Thoughts
Most moms and dads would like to be aware of their child’s sickness becomes untreatable, yet it is unclear to what degree they wish for their child to be told.
This study revealed that while nearly all parents (93%) desired information when their child’s illness became incurable, more than half of the children never received such information. Additionally, fathers were informed about their child’s incurable illnesses to a lesser extent than mothers.
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