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Determination of the Quality of Life of Parents with Children Treated in the Pediatric Oncology Clinic during the COVID-19 Pandemic and Affecting Factors
CC BY 4.0 · Indian J Med Paediatr Oncol 2024; 45(04): 293-300
DOI: DOI: 10.1055/s-0043-1769589
Abstract
Introduction Even in the absence of a pandemic, pediatric oncology patients have decreased immunological levels. This condition requires families to monitor their children's risk of infection on a frequent basis. The possibility of being exposed to coronavirus disease 2019 (COVID-19) in a hospital or community environment has created significant concern among cancer families.
Objectives This study sought to ascertain the quality of life of parents who sought treatment for their children at a pediatric oncology clinic during the COVID-19 epidemic, as well as the factors that influenced it.
Materials and Methods This cross-sectional study included 62 parents with children ages 0 to 19 who receive treatment for their children at the pediatric oncology clinic of an application and research center in Turkey's Western Black Sea area. “The Participant Information Form” and “The Scale of Quality of Life-Family Version (QOL-FV)” were used to collect data. The researchers used the face-to-face interview approach to obtain data. To investigate the differences in scale levels based on the descriptive characteristics of the parents, one-way analysis of variance, t-test, and post hoc (Tukey, least significant difference) analyses were used.
Results The total mean score of the parents' QOL-FV was found to be 148.097 ± 25.843 (87–258). In the study, it was determined that financial difficulties, difficulties in accessing the hospital during the treatment process, and changes in daily activity/behavior had negative effects on parents' quality of life.
Conclusion Most of the parents who participated in our study stated that their quality of life got worse with the pandemic. It was determined that the COVID-19 pandemic had effects on the quality of life of parents of pediatric oncology patients in various ways.
Keywords
COVID-19 - quality of life - child - cancerEthical Considerations
The Human Research Ethics Committee of Zonguldak Bülent Ecevit University granted permission to perform the research (Decision No: 30.04.2021/43431, Protocol no: 191). The institution where the researchwas conducted provided the necessary institutional permission. Prior to the study, participants were asked to sign informed consent forms. All methods in studies involvinghuman subjectswere carried out in line with the institutional and/or national research committee's ethical standards, as well as the 1964 Helsinki Declaration and its subsequent revisions or similar ethical standards.
Authors' Contributions
Concept: A.T., Z.A., Ö.Ö.Ş.; Design: A.T., Ö.Ö.Ş.; Literature search: A.T., Z.A.; Data acquisition: D.B., T.K.A.; Statistical analysis: A.T., Z.A., T.K.A.; Manuscript preparation: A.T., Z.A.; Manuscript editing: A.T., Z.A., Ö.Ö.Ş.; Manuscript review: Ö.Ö.Ş., T.K.A.
Data Availability Statement
Data available on request from the authors.
Publication History
Artikel online veröffentlicht:
25. Oktober 2023
© 2023. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution License, permitting unrestricted use, distribution, and reproduction so long as the original work is properly cited. (https://creativecommons.org/licenses/by/4.0/)
Thieme Medical and Scientific Publishers Pvt. Ltd.
A-12, 2nd Floor, Sector 2, Noida-201301 UP, India
Abstract
Introduction Even in the absence of a pandemic, pediatric oncology patients have decreased immunological levels. This condition requires families to monitor their children's risk of infection on a frequent basis. The possibility of being exposed to coronavirus disease 2019 (COVID-19) in a hospital or community environment has created significant concern among cancer families.
Objectives This study sought to ascertain the quality of life of parents who sought treatment for their children at a pediatric oncology clinic during the COVID-19 epidemic, as well as the factors that influenced it.
Materials and Methods This cross-sectional study included 62 parents with children ages 0 to 19 who receive treatment for their children at the pediatric oncology clinic of an application and research center in Turkey's Western Black Sea area. “The Participant Information Form” and “The Scale of Quality of Life-Family Version (QOL-FV)” were used to collect data. The researchers used the face-to-face interview approach to obtain data. To investigate the differences in scale levels based on the descriptive characteristics of the parents, one-way analysis of variance, t-test, and post hoc (Tukey, least significant difference) analyses were used.
Results The total mean score of the parents' QOL-FV was found to be 148.097 ± 25.843 (87–258). In the study, it was determined that financial difficulties, difficulties in accessing the hospital during the treatment process, and changes in daily activity/behavior had negative effects on parents' quality of life.
Conclusion Most of the parents who participated in our study stated that their quality of life got worse with the pandemic. It was determined that the COVID-19 pandemic had effects on the quality of life of parents of pediatric oncology patients in various ways.
Keywords
COVID-19 - quality of life - child - cancerIntroduction
The public health measures necessary to reduce viral spread, pose a major threat to children with medical complexity, especially to pediatric oncology patients.[1] [2] Childhood cancers are curable when correct diagnosis and appropriate treatment are provided on time.[3] Children with cancer often require long-term intensive chemotherapy.[4] They are at risk for reduced response rates, worsening disease prognosis, and disease relapse due to delays, interruptions, or significant changes in their treatment.[3] Although the real impact of coronavirus disease 2019 (COVID-19) on children undergoing treatment for cancer is still unknown, it is advised that standards of diagnosis, treatment, and supportive care remain unchanged during the pandemic.[4] [5] [6] [7]
Pediatric oncology patients have suppressed immune levels even without a pandemic. This condition forces families to regularly manage their children's risk of infection.[8] It is assumed that children with cancer are more susceptible to COVID-19.[9] Virus infections are also linked to higher mortality and morbidity in immunocompromised children.[10] As a result, the potential of COVID-19 exposure in hospital or community settings has created substantial concern among cancer families.[4] It has been determined that parents of pediatric oncology patients face a high psychological risk as a result of COVID-19-induced posttraumatic symptoms, high stress, and anxiety levels.[11] Lack of information about COVID-19, increased precautions due to fear of infection, concerns about the change of treatment and going to hospital, future uncertainty of COVID-19, and its psychosocial and economic impacts negatively influence the quality of life (QOL) of parents.[12] [13]
Pediatric oncology nurses are of great importance in coordinating the child's care and identifying their needs.[2] However, the health of the child is closely related to the health of the caregivers as a result of the family-centered approach, which is the most important component of pediatric care.[14] Nurses should consider not only the child's but also the emotional and social needs of the family.[15] Therefore, this study was carried out to examine the QOL of parents whose children were treated in a pediatric oncology clinic during the COVID-19 process and to determine the affecting factors.
Materials and Methods
Design, Population, and Sample
The research is a descriptive study to determine the QOL of parents who applied to the pediatric oncology clinic for the treatment of their children during the COVID-19 pandemic and to determine the affecting factors. The study's population included 62 parents with children aged 0 to 19, were literate and applied to the pediatric oncology clinic of an application and research center in the Western Black Sea region of Turkey between June 1, 2021 and January 1, 2022 for the treatment of their children. Sample selection was not made. Only the universe was studied. Inclusion criteria for family caregivers in the study were as, having a child aged 0 to 19 and receiving cancer treatment, being able to read and write, and having no psychiatric diagnosis. The exclusion criteria were to refuse to participate in the study.
Data Collection Tools
To collect data, the “Participant Information Form” and “The Scale of Quality of Life Family Version (QOL-FV)” were utilized. The researchers collected data using the face-to-face interview approach in the pediatric oncology service of the application and research hospital during working hours between the study periods.
Participant Information Form
Based on the literature, the researchers developed this form, which comprised 45 questions regarding the sociodemographic features of parents and their children, their present disease, and treatment-related status.[12] [16]
The Scale of Quality of Life Family Version
The scale developed by Ferrell and Grant was adapted into Turkish by Okçin and Karadakovan.[17] [18] Physical health, psychological health, social issues, and spiritual well-being are the four subdimensions of the 37-item measure. The study's test–retest reliability was r = 0.86, and the internal consistency Cronbach's alpha value was r = 0.90. The scale's scoring ranges from 0 to 10. The total score and subdimension scores are used to interpret the scale, and a high score indicates a high QOL.[18] The Cronbach's alpha value of the scale was found to be 0.817 in our study.
Data Analysis
The research data were analyzed in a computer environment using the SPSS 24.0 statistical program.[19] The frequency and percentage analyses were used to identify the descriptive features of the parents, and the scale was examined using mean and standard deviation statistics. The normal distribution of the research variables was discovered. Parametric approaches were used to examine the data. The links between the dimensions that affect the scale levels of the parents were investigated using correlation and regression analysis. To evaluate variations in scale levels depending on the descriptive features of the parents, t-tests, one-way analysis of variance, and post hoc (Tukey and least significant difference) analyses were utilized. The findings were evaluated within a 95% confidence range, with p < 0.05 considered significant.
Ethical Considerations
The Human Research Ethics Committee of Zonguldak Bülent Ecevit University granted permission to perform the research (Decision No: 30.04.2021/43431, Protocol no: 191). The institution where the research was conducted provided the necessary institutional permission. Prior to the study, participants were asked to sign informed consent forms. All methods in studies involving human subjects were carried out in line with the institutional and/or national research committee's ethical standards, as well as the 1964 Helsinki Declaration and its subsequent revisions or similar ethical standards.
Results
When the sociodemographic characteristics of the parents constituting the sample of the study were examined, it was determined that 32.3% of the mothers were 35 years old and younger, 32.3% were between 36 and 40 years old, and 35.5% were 40 years old and older. The mothers' educational level was 45.2% high school graduates and 30.6% associate degree graduates. It was determined that 32.3% of the mothers were employed, 67.7% were housewives/retired, and 90.3% did not have a chronic disease. It was found that 17.7% of the fathers of the children were 35 years old and younger, 30.6% were between 36 and 40 years old, and 51.6% were 40 years old and older, 38.7% were university graduates, 98.4% were employed, and 96.8% did not have a chronic disease. It was found that 66.1% of the parents had another child/children at home, 48.4% had a lower income than their expenses, 51.6% had an income equal to their expenses, and 53.2% resided in a district/town, and 12.9% had another patient/elderly dependent at home.
When the sociodemographic characteristics of the children participating in the study were examined, 58.1% were boys, 22.6% were between the ages of 1 and 3, 30.6% were between the ages of 4 and 6, 27.4% were between the ages of 7 and 12, and 19.4% were between the ages of 13 and 18. It was determined that 56.5% of those who cared for a sick child at home were mothers, while 43.5% were parents together. Note that 41.9% of the families did not reside in the same city as the hospital where they were treated, and 67.7% provided transportation by their own vehicle and 12.9% by taxi. Also, 43.5% of the children were under treatment for the diagnosis of acute lymphoblastic leukemia and 59.7% were inpatients.
The distribution of parents according to the COVID-19 pandemic and related problems is given in [Table 1]. The QOL-FV mean scores of the parents were found to be 148.097 ± 25.843 (87–258). When the subdimensions of the scale were examined, mean score of “physical health” was determined to be 26.919 ± 7.521 (13–42), “psychological health” 59.871 ± 12.775 (32–107), “social concerns” 61.307 ± 13.388 (39–122), and “spiritual well-being” 6.177 ± 2.207 (2–10) ([Table 2]).
|
n |
Mean |
SD |
Minimum |
Maximum |
|
|---|---|---|---|---|---|
|
Scale total score mean |
62 |
148.097 |
25.843 |
87 |
258 |
|
Subdimensions |
|||||
|
Physical health |
62 |
26.919 |
7.521 |
13 |
42 |
|
Psychological health |
62 |
59.871 |
12.775 |
32 |
107 |
|
Social concerns |
62 |
61.307 |
13.388 |
39 |
122 |
|
Spiritual well-being |
62 |
6.177 |
2.207 |
2 |
10 |
|
Variables |
n |
Quality of life total mean ± SD |
Physical health mean ± SD |
Psychological health mean ± SD |
Social concerns mean ± SD |
Spiritual well-being mean ± SD |
|---|
|
Variables |
n |
Quality of life total mean ± SD |
Physical health mean ± SD |
Psychological health mean ± SD |
Social concerns mean ± SD |
Spiritual well-being mean ± SD |
|---|---|---|---|---|---|---|
|
Age |
||||||
|
1–3 y |
14 |
143.214 ± 22.461 |
23.214 ± 9.545 |
59.643 ± 12.616 |
60.357 ± 7.841 |
5.500 ± 2.175 |
|
4–6 y |
19 |
141.632 ± 23.966 |
26.895 ± 5.980 |
56.421 ± 12.764 |
58.316 ± 13.246 |
5.947 ± 2.272 |
|
7–12 y |
17 |
153.882 ± 22.613 |
29.294 ± 7.856 |
62.471 ± 10.736 |
62.118 ± 12.108 |
6.765 ± 1.678 |
|
13–18 y |
12 |
155.833 ± 34.701 |
27.917 ± 5.518 |
61.917 ± 15.716 |
66.000 ± 19.475 |
6.500 ± 2.747 |
|
t |
1.218 |
1.841 |
0.792 |
0.845 |
0.995 |
|
|
p |
0.311 |
0.150 |
0.503 |
0.475 |
0.402 |
|
|
Gender |
||||||
|
Girl |
26 |
145.039 ± 31.041 |
23.615 ± 8.280 |
59.115 ± 15.050 |
62.308 ± 15.041 |
6.346 ± 2.244 |
|
Boy |
36 |
150.306 ± 21.535 |
29.306 ± 5.971 |
60.417 ± 11.041 |
60.583 ± 12.227 |
6.056 ± 2.203 |
|
t |
–0.789 |
–3.147 |
–0.393 |
0.497 |
0.509 |
|
|
p |
0.433 |
0.005 |
0.696 |
0.621 |
0.613 |
|
|
Treatment type |
||||||
|
Outpatient |
25 |
150.200 ± 18.385 |
30.240 ± 6.064 |
60.840 ± 11.564 |
59.120 ± 7.775 |
6.680 ± 1.994 |
|
Inpatient |
37 |
146.676 ± 30.019 |
24.676 ± 7.649 |
59.216 ± 13.649 |
62.784 ± 16.057 |
5.838 ± 2.304 |
|
t |
0.524 |
3.045 |
0.488 |
–1.058 |
1.489 |
|
|
p |
0.602 |
0.003 |
0.627 |
0.294 |
0.142 |
|
|
Number of course treatment |
||||||
|
4 times and less |
34 |
144.941 ± 26.122 |
26.088 ± 6.690 |
59.059 ± 12.964 |
59.794 ± 13.984 |
5.794 ± 2.422 |
|
5 times and more |
28 |
151.929 ± 25.438 |
27.929 ± 8.437 |
60.857 ± 12.707 |
63.143 ± 12.631 |
6.643 ± 1.850 |
|
t |
–1.061 |
–0.958 |
–0.548 |
–0.980 |
–1.523 |
|
|
p |
0.293 |
0.342 |
0.585 |
0.331 |
0.133 |
|
|
Presence of another chronic disease |
||||||
|
No |
59 |
148.441 ± 25.933 |
27.034 ± 7.536 |
59.780 ± 12.457 |
61.627 ± 13.604 |
6.203 ± 2.211 |
|
Yes |
3 |
141.333 ± 28.184 |
24.667 ± 8.387 |
61.667 ± 21.733 |
55.000 ± 6.083 |
5.667 ± 2.517 |
|
t |
0.462 |
0.529 |
–0.248 |
0.834 |
0.408 |
|
|
p |
0.646 |
0.599 |
0.805 |
0.407 |
0.685 |
|
Variables |
n |
Quality of life total mean ± SD |
Physical health mean ± SD |
Psychological health mean ± SD |
Social concerns mean ± SD |
Spiritual well-being mean ± SD |
|---|---|---|---|---|---|---|
|
Diagnosis of COVID-19 in the child's family |
||||||
|
No |
43 |
143.349 ± 21.372 |
25.698 ± 7.186 |
58.721 ± 11.348 |
58.930 ± 10.003 |
5.977 ± 2.241 |
|
Yes |
19 |
158.842 ± 31.966 |
29.684 ± 7.718 |
62.474 ± 15.565 |
66.684 ± 18.163 |
6.632 ± 2.114 |
|
t |
–2.247 |
–1.969 |
–1.068 |
–2.165 |
–1.079 |
|
|
p |
0.028 |
0.054 |
0.290 |
0.034 |
0.285 |
|
|
Experiencing financial difficulty due to COVID-19 |
||||||
|
No |
14 |
164.000 ± 34.331 |
25.286 ± 6.888 |
67.143 ± 14.507 |
71.571 ± 19.848 |
6.571 ± 1.910 |
|
Yes |
48 |
143.458 ± 21.059 |
27.396 ± 7.698 |
57.750 ± 11.544 |
58.313 ± 9.117 |
6.063 ± 2.292 |
|
t |
2.755 |
–0.923 |
2.525 |
3.559 |
0.757 |
|
|
p |
0.008 |
0.360 |
0.014 |
0.029 |
0.452 |
|
|
Having difficulty in the treatment of the child due to COVID-19 |
||||||
|
No |
18 |
152.333 ± 22.562 |
26.500 ± 8.515 |
61.778 ± 10.514 |
64.056 ± 13.050 |
5.833 ± 1.978 |
|
Yes |
44 |
146.364 ± 27.122 |
27.091 ± 7.175 |
59.091 ± 13.626 |
60.182 ± 13.508 |
6.318 ± 2.300 |
|
t |
0.823 |
–0.279 |
0.749 |
1.035 |
–0.783 |
|
|
p |
0.414 |
0.781 |
0.457 |
0.305 |
0.437 |
|
|
Behavioral changes in parents due to COVID-19 |
||||||
|
No |
34 |
147.853 ± 21.545 |
26.059 ± 8.431 |
60.294 ± 10.182 |
61.500 ± 11.657 |
6.177 ± 1.914 |
|
Yes |
28 |
148.393 ± 30.682 |
27.964 ± 6.233 |
59.357 ± 15.540 |
61.071 ± 15.451 |
6.179 ± 2.554 |
|
t |
–0.081 |
–0.993 |
0.285 |
0.124 |
–0.004 |
|
|
p |
0.936 |
0.311 |
0.776 |
0.901 |
0.997 |
|
|
Daily activity changes in parents due to COVID-19 |
||||||
|
No |
34 |
151.677 ± 28.355 |
26.765 ± 7.636 |
61.853 ± 12.943 |
63.059 ± 15.807 |
6.206 ± 2.115 |
|
Yes |
28 |
143.750 ± 22.147 |
27.107 ± 7.515 |
57.464 ± 12.369 |
59.179 ± 9.538 |
6.143 ± 2.353 |
|
t |
1.206 |
–0.177 |
1.355 |
1.138 |
0.111 |
|
|
p |
0.232 |
0.860 |
0.180 |
0.259 |
0.912 |
|
|
Thinking that the pandemic process affected quality of life |
||||||
|
My quality of life did not change |
23 |
153.739 ± 19.610 |
24.783 ± 8.107 |
62.565 ± 9.024 |
66.391 ± 11.011 |
6.304 ± 2.032 |
|
My quality of life got worse with the pandemic |
39 |
144.769 ± 28.615 |
28.180 ± 6.954 |
58.282 ± 14.417 |
58.308 ± 13.879 |
6.103 ± 2.326 |
|
t |
1.328 |
–1.747 |
1.282 |
2.383 |
0.345 |
|
|
p |
0.189 |
0.086 |
0.205 |
0.020 |
0.731 |
|
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Address for correspondence
Publikationsverlauf
Artikel online veröffentlicht:
25. Oktober 2023
© 2023. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution License, permitting unrestricted use, distribution, and reproduction so long as the original work is properly cited. (https://creativecommons.org/licenses/by/4.0/)
Thieme Medical and Scientific Publishers Pvt. Ltd.
A-12, 2nd Floor, Sector 2, Noida-201301 UP, India
References
- Wong CA, Ming D, Maslow G, Gifford EJ. Mitigating the impacts of the COVID-19 pandemic response on at-risk children. Pediatrics 2020; 146 (01) e20200973
- Szenes V, Bright R, Diotallevi D. et al. Stepwise strategic mitigation planning in a pediatric oncology center during the COVID-19 pandemic. J Pediatr Oncol Nurs 2021; 38 (03) 176-184
- Saab R, Obeid A, Gachi F. et al. Impact of the coronavirus disease 2019 (COVID-19) pandemic on pediatric oncology care in the Middle East, North Africa, and West Asia region: a report from the Pediatric Oncology East and Mediterranean (POEM) group. Cancer 2020; 126 (18) 4235-4245
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