Long-Term Well-Being of Parents of Childhood Cancer Survivors

Receiving a diagnosis of childhood cancer can cause significant changes not just for the child, but also for their parents. This diagnosis often leads to parents facing challenges that can lower their overall well-being and Health-related Quality Of Life (HRQOL). HRQOL looks at how well individuals feel in terms of their physical, mental, and social health.

Parents can experience lower HRQOL at various times after their child's cancer diagnosis. During the active treatment phase, many parents, especially those with young children, reported lower levels of HRQOL than what is typical for the general population. They particularly noted a decline in areas like energy, Mental Health, and the ability to handle emotional stress.

Time since the diagnosis is another important factor. In a study involving parents of seriously ill children in Australia, it was found that parents’ quality of life improved after about seven months following the initial diagnosis. Similarly, in the Netherlands, parents of children with leukemia showed improvements in their mental well-being over three years following the diagnosis. However, some studies indicate that even years later, some parents still report lower levels of HRQOL compared to standards.

Parents of long-term Childhood Cancer Survivors often show HRQOL similar or slightly better than the general population after many years post-diagnosis. However, these parents sometimes report more mental health issues compared to typical data. Understanding whether low HRQOL persists long after a child's cancer diagnosis remains essential, as this information can help identify the ongoing need for support for parents.

Research has also shown differences in HRQOL between mothers and fathers of children with cancer. Generally, mothers report lower mental and psychological health compared to fathers. Over time, the gap between their HRQOL levels seems to narrow. Along with gender, various factors impact HRQOL in parents of childhood cancer survivors. For example, higher education levels correspond with better HRQOL, while specific cancer-related factors, such as type of treatment received, can lead to lower HRQOL.

#Study Overview

This study examined the HRQOL of parents of long-term childhood cancer survivors (CCS) in Switzerland. It aimed to compare these parents’ HRQOL with that of parents in the general population and to look into factors that might influence their HRQOL.

#Participants and Method

The participants included parents of CCS who were part of a broader study looking at late outcomes in those parents. The data for the study came from a nationwide registry that keeps track of childhood cancer cases in Switzerland. Parents of CCS were invited to participate in the study through letters, followed by questionnaires that were sent out for individual completion.

A comparison group was also selected from the general Swiss population. This group consisted of parents who had at least one child aged 20 or older at the time of the study.

Both groups were provided study materials in the main languages of Switzerland, ensuring inclusivity. Different versions of the invitation were sent out to help gauge different perspectives on the study.

#Health-Related Quality of Life Assessment

To assess HRQOL, the Short Form-36 version 2 (SF-36v2) was used. This tool evaluates various dimensions of health and well-being, including physical functioning, mental health, and social roles. The questionnaire is straightforward and typically takes around 5 to 10 minutes to complete, making it accessible for participants.

Results from the SF-36v2 were processed to derive scores representing both physical and mental HRQOL. Higher scores indicate better quality of life.

#Sociodemographic and Cancer-related Characteristics

The questionnaires collected various sociodemographic details from parents, including gender, age, Educational Level, employment status, and whether they had any Chronic Health Issues. For the parents of CCS, specific information about their child's cancer diagnosis, treatment, and any long-term effects was also gathered.

#Findings on Parents' Quality of Life

Out of the parents surveyed, a significant number completed the questionnaires. The comparisons between parents of CCS and those from the general population displayed notable similarities in HRQOL across both physical and mental health domains.

Mothers of CCS generally had comparable HRQOL with mothers from the general population, except in physical functioning, where mothers of CCS reported better outcomes. Fathers of CCS did not show significant differences in HRQOL when compared to fathers from the general population.

#Factors Influencing HRQOL

In the analysis, several factors were identified as influencing the HRQOL of parents of CCS. Lower educational attainment, living in certain regions of Switzerland, and having chronic health conditions were associated with lower physical HRQOL. In terms of mental HRQOL, being a mother, having a migration background, and living in the French or Italian speaking regions of Switzerland were linked to lower scores.

Interestingly, while many cancer-related factors did not show a significant impact on HRQOL, some studies have indicated that things like time since diagnosis or treatment intensity can also play a role in parents’ quality of life.

#Conclusion

In summary, the study provided key insights into the long-term HRQOL of parents of childhood cancer survivors in Switzerland. These parents showed HRQOL levels similar to those of parents in the general population, suggesting they managed to recover after the challenges posed by their child’s illness.

While some differences appeared between mothers and fathers, the overall findings indicated that the issues impacting parents didn't solely relate to their child’s cancer. Many sociodemographic factors were found to influence their quality of life, suggesting that support for parents should focus on a broader range of challenges they may face beyond the immediate crisis of a child's cancer diagnosis.

Moving forward, it’s essential to continuously support these parents, especially those facing additional challenges, ensuring their well-being long after the initial treatment phase for their children. Understanding the ongoing impacts of having a child with cancer can help improve support strategies and resources available to parents in similar situations.