Developing the care burden scale in the families of children with cancer and determining the affecting factors

Purpose: The main purpose of this study is to develop a new, original and new care burden scale that can evaluate the care burden levels of family for cancer children and determine the factors affecting the care burden of families. At the same time, the secondary aim of the study was to evaluate the effect of caregivers on care burden by defining family functions and relationships with the Family APGAR Scale. Methods: The research was methodological and descriptive type, between May 15, 2018 and February 18, 2019 at the Ege University Medical Faculty Tülay Aktaş Oncology Hospital Pediatric Oncology Service and Polyclinic, Ege University Medical Faculty Children's Hospital Hematology Service and Polyclinic, Health Sciences University İzmir Tepecik Training and Research Hospital Children Hematology and Oncology Service was conducted with caregivers of children diagnosed with cancer. In this direction, 217 caregivers selected by stratified sampling method formed the sampling group. The questionnaire used as data collection method in the research; Caregiver information form, Family APGAR Scale, Zarit Caregiver Burden Scale and developed Care Burden Scale were used. Delphi technique was used to create the pool of substances related to the "Care Burden Scale". The content validity of the draft care load scale, which consists of Delphi technique results, was realized by using Dawis method. In addition, a pilot study was conducted with 35 caregivers. In the analysis of the data, descriptive statistics, t test, variance analysis and Pearson correlation analysis were applied by using SPSS 21.0 for Windows package program. For the validity and reliability of the scale, Cronbach Alpha coefficient, item test correlation scores, explanatory and confirmatory factor analysis were calculated. Results: It was determined that 90.8% of the individuals caring for cancer-diagnosed children were women, 91.7% were married and 85.7% were the mother of the child. The mean age of the caregivers was 36.64 ± 7.39 (± SD). It was found that 73.7% of the caregivers did not work in a regular job, 59.4% of them were less than their income and the average care period was 15.24 ± 13.90 (± SD). It was determined that 61.3% of the children received support from their spouses. Kaiser-Meyer-Olkin (KMO) value of the care load scale was 0.858, Bartlett's testti (2 = 5126.083 was found to be significantly significant. The scale was divided into four factors explaining 68.345% of the total variance. The sub-dimensions of the scale were named as emotional burden, socio-cultural and economic burden, mental burden and physical burden. Cronbach Alpha reliability coefficient was found to be 0.930, test-retest reliability was 0.826 and parallel test reliability was 0.841. The item total score correlations ranged from 0.428 to 0.645 (p <0.001). Compliance criteria obtained by confirmatory factor analysis were found in the acceptable limits of RMSEA = 0.087, NNFI = 0.910, CFI = 0.920 and IFI = 0.920, and the Chi-Square / Degree of Freedom (N2 / df = 2.129) showed the perfect fit of the model. General care burden scores of caregivers were found to be moderate, and their physical burdens were significantly higher than other burdens. Family APGAR relationships of caregivers were found to be quite high. As caregiver family relationships increased, the burden of care burden decreased. Conclusions: The care burden scale is a valid and reliable scale consisting of thirty-six items and four sub-dimensions in a five-point Likert type which can be used to evaluate the care burden of caregivers of children with cancer in the Turkish population. In addition, it has been shown that family relationships play an important role on the burden of care. It is recommended to evaluate the results by using the care load scale by health professionals in different sample groups to evaluate new results.