Knowledge and Performance of Mothers Having Children with Cancer Undergoing Chemotherapy

Introduction

Childhood cancer is a significant public health problem worldwide and is the second leading cause of death after accidents in children ages one to fourteen. Approximately 1,190 children under the age of fifteen are predicted to die from cancer in 2020. Around 11,050 children in the United States under fifteen will be detected with cancer in 2020. Childhood cancer rates have been rising to some extent for the past few decades. Because of significant treatment advances in recent decades, 84% of children with cancer now survive five years or more. Overall, this is a considerable increase since the mid-1970s, when the 5-year survival rate was about 58% (American Cancer Society, 2020).

More than eighty percent of children with cancer are preserved in high-income countries, but in many low-income and middle-income countries (LMICs), only 20% are cured. The reasons for lesser survival rates in LMICs include an incapability to attain an accurate diagnosis, inaccessible therapy, abandonment of treatment, death from toxicity (side effects), and excess relapse, in part due to lack of access to essential medicines and technologies addressing each of these gaps expands survival and can be highly cost-effective (World Health Organization [WHO], 2018; Howard et al., 2018).

In the study of childhood cancer survivors and health outcomes over the last ten years in Children's Cancer Hospital 57357 Egypt (CCHE), to determine the variations in survival by demographic, cancer type. A total of 15,997 children with cancer were analyzed; 58% were males and 42% females. The highest percentage of the children (48%) were in the youngest age group (0–4 years). Fifty-nine percent of the children had solid tumors, and 41% had hematologic malignancies. The most common cancers were leukemia, lymphoma, central nervous system (CNS) tumors, and neuroblastoma. The survival rate was calculated for 14,553 children, representing 92.2% of the full study population (Soliman, Elhaida, Oke, Eweida, & Sidhom, 2019).

Recently, Attar, Zagade, and Shinde (2020) documented that childhood cancer is treated with different treatment methods commonly involving chemotherapy, radiotherapy, surgery, immune therapy, stem cell therapy, targeted cell therapy, hormonal therapy, and precision medicine. As reported by Marcdante and kliegman (2019); Singaraju, Palaian, Shankar, and Shrestha (2020), chemotherapy is used in almost all cases of cancer in children. Over 50% of the children with cancer undergoing chemotherapy develop adverse drug reactions (ADRs). Cancer chemotherapeutic agents kill cancerous and the normal rapidly dividing cells, including bone marrow cells, gastrointestinal epithelium, hair follicles, and other side effects. Their main ADRs are nausea and emesis, mucositis, constipation, diarrhea, hematological toxicities, cardiac toxicity, alopecia, gonadal toxicity, pulmonary toxicity, neurotoxicity, and nephrotoxicity. The severity of the adverse effects may vary from mild nausea to life-threatening neutropenia.

According to Tomlinson, Yuan, Cheng, and Hinds (2020), successful management of symptoms are imperatively attributable to the potential for harmful effects on the child's health and well-being. Children with cancer experience a myriad of symptoms, often occurring as symptom clusters. Symptoms for children with cancer and their families are burdensome, distressing, and often challenging to control. These symptoms result from the condition, its treatment, and associated procedures that can hinder the child's psychosocial and physical development and have adverse effects on the child's and family's quality of life. Experiencing frequent and severe symptoms is accompanied by a lower quality of life and may hinder multiple aspects of a child's development.

As documented by Ameringer, Macpherson, and Jibb (2020), Valizadeh et al. (2020), chemotherapy's side effects might keep a child from partaking in social interactions, such as playing or being with peers, that are key to facilitating psychosocial development. Symptoms as loss of appetite, nausea, and vomiting lead to inadequate nutritional intake, negatively affecting physical development. Detecting patients' needs is one of the primary steps of the nursing process to plan and implement nursing interventions and prevent late effects.

Leading health care organizations, including the WHO and the American Academy of Pediatrics (AAP), have endorsed that pediatric palliative care (PPC) ought to begin once a severe or life-threatening condition is diagnosed and continue no matter whether or not a child receives treatment aimed toward comfort or cure. Nurse clinicians and scientists were amongst the front runners within the field of pediatric palliative care within oncology. Several of the early nurse-led studies focused on the perspectives of mothers caring for their children with incurable cancer. Symptom management is a foundation of PPC, thus supporting the need for the early integration of PPC (Newman, Crane, Spruit, Alharrasi & Bell, 2020).

Family education is an integral and crucial component of nursing care in pediatric oncology; it has recently been identified as a clinical and research priority within the pediatric oncology community. Expert consensus recommendations have been developed to usher the provision of education to families of newly diagnosed patients. Abundant the existing evidence for the provision of patient and family education in pediatric oncology is targeted to the time of initial cancer diagnosis. This underscores the overwhelming quantity of new information that is often provided in parallel with families' need to understand the diagnosis and treatment to provide safe care for the child within the home setting. It also highlights the significant emotional impact of the new cancer diagnosis upon the child and family (Haugen, Zupanec &Landier, 2020).

Significance of the study

Cancer is a chief cause of death among children worldwide; it's a life-threatening condition and a significant public health problem for pediatric patients. Globally millions of children die yearly due to cancer. 1,735,350 newly diagnosed cases and 609,640 cancer deaths are projected to occur in the United States (Siegel, Miller & Jemal, 2019).

The global cancer burden has doubled within the last thirty years of the twentieth century. It is estimated that this will double again between 2000 and 2020 and nearly triple by 2030. The cancer incidence estimate was 113.1/100,000 of the total population in 2012, and 114,98/100,000 of the total population in 2013. Projections to 2050 estimate cancer incidence in Egypt to be 341.169/100,000 of the total population (National Cancer Control Plan of Egypt 2016-2020). Kamel, Baraka, Khalid, and Ibrahim (2009) reported that according to the results of Egypt National Cancer Registry, Minia profile, the total number of malignancies reported during 2009, amongst children under the age of 15 years, was 258 cases; these cases represented 5.6% of all incident cancers (total of 4584 patients).

Hence, the current study was undertaken to assess mothers' knowledge and performance regarding the care of children having cancer and undergoing chemotherapy. Results of the current study may help in evaluation of the mothers' knowledge and performance regarding care of children having cancer. As well as providing guidance and recommendations that should be reflected in pediatric nursing education and practice.

Aim of the study

The current study aimed to assess the knowledge and performance of mothers having children with cancer undergoing chemotherapy.

Research Questions

The current study results answered the following research questions:

• What is the level of mothers' knowledge regarding the care of children having cancer and undergoing chemotherapy?
• What is the level of mothers' performance regarding the care of children having cancer and undergoing chemotherapy?

Research design:

A descriptive research design was utilized to achieve the aim of the current study. This design helps describe a situation or an event in exploring and knowing the level of mothers' knowledge and performance regarding the care of children having cancer and undergoing chemotherapy.

Subjects:

A purposive sample of 35 mothers having children with cancer and undergoing chemotherapy participated in the current study.  According to the statistical equation in which the sample size ranged between 10% to 30% from the total population size, the entire pediatric population admitted to the pediatric oncology unit at Minia Oncology Center was 126 children in 2017.

Inclusion criteria:

• Mothers were having newly diagnosed children with cancer and free from chronic illness as diabetes or renal failure or other types of malignancies.
• Mothers were having children and undergoing chemotherapy for the first time.
• Mothers who agree to participate in the study regardless of their age or educational level.
• Mothers who have no other child with cancer or any cancer patient receiving chemotherapy.

Setting:

The current study was conducted at the pediatric oncology unit at Minia Oncology Center that is located in Minia city. It serves Minia governorate and affiliated with the Ministry of Health and Population.

Data collection tools:

The following data collection tools were utilized. The researcher developed the tools after reviewing the related literature.

Tool (I): Structured Interview Sheet: It involved 16 questions and classified into two parts:

Part I: It contained 11 items that cover the personal data of the mothers as age, educational level, material status, place of residence, and the number of children in the family. It also comprised the characteristics of the children with cancer and undergoing chemotherapy such as age, gender, and rank within the family.

Part II: It is comprised of five questions covers the current medical history of the children as diagnosis and type of cancer, as well as the duration of illness, medications, and previous hospitalization.

Tool (II): Mothers; Knowledge Assessment Sheet: It involved 21 questions classified into two parts:

Part I: It involved 5 Multiple Choice Questions (MCQs) to assess the mothers' knowledge regarding cancer, including definition, causes, predisposing factors, signs and symptoms, and methods of management.

Part II: It contained 16 MCQs questions to assess mothers' knowledge regarding chemotherapy, including definition, types, uses, phases, side effects on bone marrow, skin, digestive and respiratory systems, precautions, and measures to reduce the side effects.

Tool (III): Mothers' Performance Assessment Sheet:

It involved 17 MCQs questions to evaluate the mothers' performance regarding the care of their children with cancer, such as care of signs and symptoms, e.g., nausea, vomiting, pallor, fatigue, bone or joint pain, infection, and anorexia. Mothers' performance was assessed regarding chemotherapy sessions, such as dealing with chemotherapy's side effects, e.g., fever, bleeding tendencies, mucosal ulceration, pain, nausea, and vomiting.

Scoring system: for mothers' knowledge and performance, each correct/ complete response took two scores; the incomplete one took one score, and zero score was given for the wrong answer or the not known/ done. The total score was converted to 100% and then categorized as following: score (≥ 50%) was considered satisfactory level; meanwhile, mothers' overall score (less than 50%) was regarded as an unsatisfactory level of knowledge/ performance. The total mothers' knowledge score was 42, while 34 scores for the mother's total response related to their performance.  . 

Validity and Reliability

 The content validity of the tools was performed by a jury of 5 experts in pediatric nursing and pediatric oncology. Tools were examined for content coverage, clarity, relevance, applicability, wording, length, format, and overall appearance. Based on experts` comments and recommendations, modifications were made. The internal consistency was measured to identify the extent to which the tools measure the same concept and correlate. Cronbach's alpha coefficient was used to assess the tools' internal consistency were .0861 & .910, correspondingly.

Ethical Considerations:

Written approval obtained from the Research Ethics Committee of the Faculty of Nursing, Minia University; there was no risk for study subject during application of the current study, oral consent was taken from all mothers to participate in the study. The researcher explained the study's purpose and nature through direct personal communication before participating in the study. These data were confidential and were used for the research only. The study followed the common ethical consideration to participate in clinical research, and privacy was assured during data collection. Anonymity and privacy were assured through coding the data, and a mother has the right to refuse to participate in the study without any rationale. Children and their mothers were informed that participation in the study was voluntary; the researcher also informed the mothers about their rights to withdraw from the study without giving any reason and without any effect on their children's care.

Data Collection Procedure:

Primary approval was obtained from the Research Ethics Committee, Faculty of Nursing, Minia University. Official permission was obtained from the administrator of Minia Oncology Center and permission from the head of the pediatric oncology unit after explaining the study's aim and nature. After that, data collection started; the researcher went to Minia oncology center for two days per week.

Mothers were interviewed on individual bases to explain the nature and purpose of the study and obtain personal data about their children's characteristics and current medical history with cancer and undergoing chemotherapy (tool I). The interview took place in the inpatient rooms in the pediatric oncology unit at Minia Oncology Center. Mothers' knowledge and performance regarding their children's care with cancer and undergoing chemotherapy were assessed using (tools II, III). The duration of the interview was ranged from 25-30 minutes. Data collection was conducted over twelve months extending from January 2019 till December 2019.

Pilot Study 

The pilot study was conducted on 10% (four mothers having children with cancer and undergoing chemotherapy) who met the inclusion criteria was done to ensure the feasibility, objectivity, applicability, clarity, adequacy, content validity, and internal consistency of the study tools and to determine possible problems in the methodological approach or the tools. The tools were completed without difficulty, adding support to the validity of the tools. Little modifications were made, e.g., rephrasing and rearrangements of some sentences. Mothers involved in the pilot study were excluded from the main study sample.

Statistical Analysis

 The collected data were coded, tabulated, and analyzed using the Statistical Package for Social Science (SPSS 20.0). Descriptive data were expressed as mean and standard deviation. Qualitative data were expressed as frequency and percentage. Fisher test was used to detect the relation between mothers' knowledge based on their selected personal variables. Comparisons of means were performed using a paired-sample t-test. Level of significance at p<0.05, 0.001 were used as the cut of value for statistical significance.

Results:

Table (1): Personal Data of Studied Mothers in Percentage Distribution (n=35).

Regarding mothers' personal data, the current study results revealed that more than two fifth (45.7%) of the studied mothers were 35- < 40 years old, and the mean of their age was 42.5 ± 5.4 years. All (100%) of mothers who participated in the current study were mothers. More than half (51.4 %) of them have basic education, and 94.3% lived in rural areas (Table 1).

Table (2): Personal Characteristics of Studied Children Having Cancer and Undergoing Chemotherapy in Percentage Distribution (n=35).

Table (2) clarified that 40% of the studied children were 5 - < 10 years old, their mean age was 3.4 ± 4.0 years, and 60% were female. More than half (51.4%) of the children were ranked as the third and more within their families.

Table (3): Current Medical History of the Studied Children in Percentage Distribution (n=35).

Table (3) showed that 40% % of children have Leukemia, followed by Lymphoma, and 57.1% were discovered within the last two weeks. The majority (85.7%) of the children didn't have any cancer-related surgery performed on them. Fever and enlarged lymph nodes were the main symptoms experienced by children in the current study (22.9% & 20% respectively).

Figure (1): Number and percentage distribution of Mothers who Received Information About Childhood Cancer and Chemotherapy (N=35).

Regarding mothers' knowledge, Figure (1): proved that the majority (85.7%) of the mothers hadn't been given any knowledge about childhood cancer and chemotherapy.

Figure (2): Sources of Mothers Been Given Knowledge About Childhood Cancer and Chemotherapy in Percentage Distribution (N=35).

Regarding the sources of knowledge given to mothers about childhood cancer and chemotherapy, figure (2) proved that the mothers' highest percentage (60%) received their knowledge about childhood cancer and chemotherapy from physicians.

Table (4): Mothers' Knowledge about Childhood Cancer and chemotherapy in Percentage Distribution (n= 35).

Table (4) highlighted that all (100%) of the mothers don't know the definition of cancer, predisposing factors of childhood cancer, treatment methods, and uses of chemotherapy. The majority (88.6%, 97.1% & 91.4%, respectively) of the mothers don't know the most common types of cancer in children and its symptoms and cannot define chemotherapy. The total mean score of the mothers' knowledge was 10.4±4.

Table (5): Mothers' Performance Regarding Chemotherapy in the Pre-test, Post-test, and Follow-up (n= 35).

In relation to the mothers’ performance regarding childhood cancer and chemotherapy, table (5) revealed that equal percentages (88.6%) of the mothers don’t know the side effects of chemotherapy on bone marrow, digestive system, skin, and hair and respiratory system. All (100%) of the mothers don’t know what to do in the case of their children exposed to infection, bleeding, anorexia, vomiting, pain, hair loss, and mouth and throat problems. The total mean score of the mothers’ knowledge was 4.8±0.7.

Table (6): Mothers' Level of Knowledge and Performance Toward Childhood Cancer and Chemotherapy(n = 35).

Table (6) demonstrated that all (100) of the mothers had an unsatisfactory level of knowledge and performance regarding childhood cancer and chemotherapy.

Table (7): Relations Between the Total Mean Score of Mothers' Knowledge Regarding Cancer and Chemotherapy and Their Personal Data (n= 35).

 NS= Not statistically significant differences ** Highly statistically significant differences

Regarding the relations between the total mean score of mothers' knowledge regarding childhood cancer and chemotherapy and their personal data, table (7) illustrated that there were no statistically significant relations between the total mean scores of mothers' knowledge regarding childhood cancer and chemotherapy and their age, level of education, social status, place of residence, occupation, and family type  (p=>0.05).

Table (8): Relations between the total mean score of the mothers' performance regarding cancer and chemotherapy and their personal data (n= 35).

 NS= Not statistically significant differences   * = Statistical significant differences 

** Highly statistically significant differences

Regarding the relations between the total mean scores of mothers' performance regarding childhood cancer and chemotherapy and their personal data, table (8) illustrated that there were statistically significant relations between the total mean score of mothers’ performance and their level of education and type of family (p=<0.05). There were no statistically significant relations between the total mean scores of mothers' performance regarding childhood cancer and chemotherapy and their age, social status, place of residence, and occupation (p=>0.05).