The current study focused on psychosocial problems and health-related quality of life of adolescents and young adults with parents suffering from palliative cancer versus cancer in other disease stages, and on associations of both outcomes with coping. As compared to other samples, more adolescents in our overall sample (15%) indicated abnormally high SDQ scores, and 20% characterised their health as fair or poor. But in contradiction to our hypothesis, adolescents whose parents were in other disease stages described themselves as having more psychosocial problems and worse HRQoL than adolescents with parents suffering from palliative cancer. Correspondingly, these adolescents reported more total, emotional, and behavioural problems, worse overall, physical, and psychological well-being, as well as more problems in their school environment than adolescents with parents in palliative situations. SDQ and Kidscreen scores of adolescents with parents suffering from palliative cancer were similar to those of the comparison samples.
Similarly in another study, forewarning of death was associated with poorer parent- and teacher-rated outcomes, but better child-rated outcomes
. As one explanation for these findings, cancer might be characterised by insecurity from the first diagnosis. From a care perspective, the findings of our study point to the need for psychosocial support for adolescents whose parents are suffering from cancer throughout the entire parental disease course.
Above, empirical studies show that children of cancer patients often conceal their thoughts in order to protect their parents
, and it might be speculated if this might apply even more in parental palliative disease. Low self-report scores might further reflect the child's efforts to ward off potentially overwhelming emotions
. Child symptoms might occur later, past the most distressing period.
Beyond, parental disease status may not affect child psychosocial adjustment in isolation, but in association with other family aspects, like communication
. Parents often seek our counselling worrying how to talk with their children about disease deterioration. As our data illustrate the status at the beginning of counselling, our clinical experience shows that often, children were not informed about the palliative situation yet. Since patients still seem to be physically quite stable, changes might not have been evident in everyday life very much, and being (not) informed about parental disease status influences children's coping
As opposed to other empirical results, we found no age and gender differences in psychosocial problems and coping, and no gender differences regarding HRQoL in our sample. The only age effect was related to total and physical well-being: older adolescent's reported decreasing HRQoL, which is a consistently observed empirical result
Parental disease status was the most important predictor of psychosocial problems and HRQoL, and results interpretable in line with previous results. Again, older age was associated with lower HRQoL. Additionally, worse general family functioning predicted more psychosocial problems, and worse HRQoL. This is in accordance with the importance of family-related aspects documented in the literature
The Kidcope is a commonly used short instrument assessing coping in a convenient way, but data are less detailed which influences psychometric properties
[48, 49]. As our mediator analysis showed, coping might mediate the influence of parental disease stage on adolescent's psychosocial adjustment, which should be analysed using further coping instruments in palliative care research.
Compared with diabetes patients, adolescents in our overall sample used most strategies less often, but perceived most strategies to be more efficacious which might be understood as a psychologically protective mechanism. Although there were no significant differences between adolescents of the two groups, children of palliative patients applied resignation more often and perceived this, just as distraction, as helpful strategies. Accordingly, in uncontrollable situations, disengagement / emotion-focused coping tends to be associated with better psychosocial adjustment
. Essential issues that should be considered in further studies in the field are perceived controllability and subjective appraisal of illness severity, and their influence on coping
Our study comprised a convenience sample of middle and upper social class families seeking counselling. As adolescent's mean age was 14 years, it appears that our counselling did not reach older adolescents to the same extent. Physical and psychological well-being and family functioning are likely to vary in the course of the palliative phase which could be further elaborated by longitudinal designs. As we referred to cross-sectional data, the results of the mediational analyses do not allow for causal interpretations. Again, future work could build on our findings and examine these associations over time. In addition, studies on adolescents of palliative patients could include more sensitive or disease-specific items, maybe by combining the qualitative and quantitative approach.