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Όλγα Σίσκου, Επίκουρη Καθηγήτρια, Τμήμα Τουρισμού, Πανεπιστήμιο ΠΕΙΡΑΙΑ
Δάφνη Καϊτελίδου, Καθηγήτρια, Τμήμα Νοσηλευτικής, ΕΚΠΑ
Πέτρος Γαλάνης, Επίκουρος Καθηγητής, Τμήμα Νοσηλευτικής, ΕΚΠΑ
Summary:
Introduction: The onset of childhood cancer affects the whole family. Parents of children with cancer are called upon to deal with the physical, psychological, social and economic consequences of the disease. These consequences negatively affect both the sick child and his family, making it difficult to adapt to the disease.
Purpose: The purpose of this study was to investigate the consequences of caring for pediatric cancer patients in the family, in terms of quality of life and financial burden, as well as to investigate the factors that make it difficult or easier for the family to adapt to the new situation.
Material and Method: This is a non-invasive synchronous study, with a study population of 100 parents-caregivers of children with neoplasms, whose children were treated at the Oncology Clinic of Children and Adolescents of "MITERA" Hospital, as well as parents of children with cancer who live in the structures of the association "THE FLAME". The parents completed an anonymous self-administered questionnaire, which contained demographic and social parameters, the questionnaire for the quality of life of caregivers EuroQol EQ-5D (EQ-5D-3L) and a questionnaire to investigate the financial burden.
Results: The study found that in 80% of children with cancer both parents were systematically involved with the child as primary caregivers. In addition, the total score of the EuroQoL questionnaire was calculated at a satisfactory level (M = 0.77, TA = 0.075). The majority (70%) of the parents reported at least a good level of health with an excellent value of 100% and a statistically significant difference between the two sexes was found (p = 0.07) with men reporting a better level of health. A significant percentage of caregivers (83%) reported a moderate level of anxiety / sadness, with no statistically significant difference between men and women (p> 0.05, men = 1.91 vs women = 2.04). Also 61.6% of caregivers stated that they were absent from work for 1-6 months and for 80% of caregivers the self-assessment of their efficiency in their work was at a very low level (less than 50%). At the same time, there was a reduction in the working time of caregivers after the onset of the child's illness, an average of 23.5 hours per week, resulting in a monthly loss of productivity in monetary terms of € 375.52. Men compared to women rated their work efficiency higher after the onset of the child's illness (p = 0.00) and there was a statistically significant difference between the sexes in terms of working hours before and after the onset of the illness of the child (p =, 001), with men showing more working hours.
About 20% of child caregivers changed jobs after the onset of the child's illness and there was no statistically significant relationship between gender and maintaining the same profession. An important finding of the study was that almost 50% of the caregivers, who lived before the onset of the child's illness outside Athens, were forced to move to Athens after the onset of the child's illness. It was also found that 2/3 of the caregivers received financial assistance for the child's illness (OPEKA), with the average amount amounting to € 329.19 (TA = € 369.48) and with an average payment start time (after diagnosis of the child's disease) of the allowance at 8 months.
Finally, the total average expenditure for the family was calculated, which amounted to € 4,833 for the eight-month treatment period of the acute phase, while the average monthly expenditure amounts to approximately € 604, an amount that approaches the minimum monthly salary (€ 650).
Conclusions: Caregivers of children with cancer carry a significant burden that affects every area of their lives, physically, psychologically, socially and financially. The emergence of psychological, social and economic impact on the family, after the diagnosis of cancer in the child, is a key step in providing information to manage the special needs that arise in caregivers and to formulate strategies to alleviate the burden and support the family.
Keywords:
Childhood cancer, Parents- caregivers, Quality of life, Burden, Financial burden
