ABSTRACT
In this study, it was planned to examine fatigue, well-being and life habits in children with cancer.
This cross-sectional analytical study was conducted between September 2019-January 2020. “24-Hour Child Fatigue Scale”, “Child Well-being Assessment” and Child Life Habit Questionnaire (LIFE-H for Children 1.0)” were administered to 20 children with cancer aged 5-15 years. Pearson’s correlation coefficient was used to determine the statistical relationship between life habits, fatigue and well-being. Statistical significance level was accepted as p<0.05.
There were significant relationships between fatigue and personal care, shelter and mobility parameters of life habits (r=-0.66, r=0.54, r=0.45, p<0.01, respectively) and there were significant relationships between fatigue and negative emotions (r=0.46), overall life satisfaction (r=-0.52), general happiness (r=- 0.49) and positive emotions (r=-0.44 *) parameters of well-being assessment. Life habits scale was found to be related with nutrition, physical fitness and communication parameters of Child Life Habit Questionnaire were found to be most related with the meaning and purpose parameter of the well-being assessment (p<0.01). There were significant relationships between positive emotions and recreation (r=0.45, p=0.04); optimism and communication (r=-0.44, p=0.04); personal care (r=-0.49, p=0, 02), social life (r=-0.46, p=0.04) and autonomy; and mobility and negative emotions (r=-0.45, p=0.04).
Considering the relationships determined in this study, the evaluation of the children with cancer and treatment approaches can be shaped. The fact that fatigue affects all aspects of children’s life reveals the importance of dealing with fatigue. It is recommended to focus on the meaning and purpose and regain autonomy for children in order to rearrange the life habits of the children and ensure their well-being.
Keywords: Cancer, child, fatigue, life habits, wellbeing
Introduction
Diagnosis of cancer in childhood is rarer than in adults. Between 2001 and 2010, diagnosis of childhood cancer was 13% more common than in the 1980s, and its incidence in the 0-14 age group was 140 per million (1,2). Today, 70% of children diagnosed as having cancer recover, but 30% die due to recurrence of the disease and lack of response to treatment (3-5). Although it was important how the treatment process would progress in diseases such as cancer in the past, psychosocial issues have started to attract more attention with the prolongation of life expectancy (6,7). Therefore, the effects of cancer treatment on physical and psychosocial well-being and quality of life have become increasingly important (8).
Cancer and chemotherapy generally leads to symptoms such as joint and muscle pain, fatigue, edema, growth retardation, fatigue, anxiety, depression, sleep disorder, increased cytokine production, cachexia, decreased physical function, anemia, anger, frustration, isolation from daily life, and introversion in children (9). Fatigue is a frequent finding in 70-100% of children and young patients with cancer (9-11). It can occur at the time of diagnosis and becomes increasingly common as the disease progresses (12,13). Cancer-related fatigue results from the complex effect of physical, mental, emotional, environmental and pathological factors (12,14). Fatigue, which is a subjective and multidimensional experience, negatively affects the lives of patients with cancer. Therefore, it is very important to evaluate fatigue in cancer from the patient’s perspective (15,16).
Studies on well-being have increased in recent years (17,18). Thomas used an expression for well-being as “it is abstract, difficult to define and even harder to measure” (19). Well-being is a subjective expression and includes much more than the concept of happiness (20). It is reported that well-being consists of three interrelated components: Satisfaction with life, positive and negative emotions (21). Studies on the well-being of children with cancer have increased in recent years (22,23).
Life habits are defined as “the daily activities and social roles necessary to ensure the survival and self-development of a person throughout life” (24). In the latest version of the International Classification of Functioning, Disability and Health (ICF), “Disability and Health” is defined as participation of a person in relation to his/her life and nine activities that have an impact on participation are listed as follows: Learning and application of knowledge, general tasks and needs, communication, mobility, personal care, home life, interpersonal interaction and relationships, major living spaces and communal, social and civic life. The World Health Organization emphasizes the necessity of benefiting from this activity list when evaluating life habits (25). Although there are reports in the literature on life habits, they do not cover all parts that a child participates in life or all aspects of these parts (26-29).
The stability of the well-being of individuals depends on a dynamic balance (30,31), and this balance includes parameters such as physical well-being, large amount of physical resources, absence of fatigue, emotional control, social functionality, and activities (32,33). Fatigue can change physical condition, psychological and spiritual self, cognitive functioning, expectations and quality of life (34). Curt found in his study that fatigue affected every aspect of daily life and stated that these were related to the physical, emotional, psychological and social consequences of fatigue (15). Children may not be aware of changes in fatigue, physical endurance, and activities of daily life, but children over the age of 13 may notice a lack of energy (35). It is known that many components change simultaneously in the lives of children with cancer. However, there is no study in the literature examining the relationship between fatigue, well-being and life habits in children.
The aim of this study is to evaluate the fatigue, well-being and life habits that are thought to affect the treatment process in children diagnosed as having cancer and to examine the relationship between them.
Method
Type of Research
This research was a cross-sectional analytical type study.
Population-Sample of the Research
In this study, which was carried out between September 2019 and January 2020, all children between the ages of 5-15 who were hospitalized in the pediatric department of Hacettepe University Oncology Hospital, were diagnosed as having cancer, were not in the terminal phase, and in whom treatment was started were included. Twenty children, 11 girls and 9 boys, who completed the questionnaires in time, formed the sample of the study.
Data Collection Tools
Research data were collected using the “Child and Parent Information Form, 24-Hour Child Fatigue Scale, Child Well-Being Assessment and Child Life Habit Questionnaire”.
Child and Parent Introduction Form: This form was created by researchers to determine the introductory characteristics of children and parents. In the form, five questions were about children’s age, gender, education level; and five questions were about parents’ age, education level, occupation, income status and family type. According to the information obtained by the parents, the children who got a passing grade in their classes were considered to be successful at a “moderate level” in terms of school success; children with grades above the class average were considered to be successful at “good level”.
The 24-Hour Child Fatigue Scale: It was developed in 2001 by Hinds et al. (36) and revised in 2007 to shorten it. The Turkish validity and reliability of the scale was performed by Gerçeker and Yılmaz (37) in 2010. This scale, which is the 24-hour form of the child fatigue scale, includes 10 items questioning whether the child has been tired in the last 24 hours. It includes 5 different options for each item as “not at all, a little, some, quite a bit, and a lot” and each item is scored between 1-5. A minimum of 10 and a maximum of 50 points are obtained from the scale. As the scores obtained from the scale increase, the child’s fatigue level increases (37).
The Child Well-being Assessment: It consists of 21 questions included in the New Economics Foundation publication, Guide for Measuring Children’s Well-being, and each question is answered by the child (38,39). Translation of the scale was carried out in accordance with the Beaton translation protocol (40). The questions were grouped under four main headings as "well-being dimension, general life satisfaction, general happiness, positive and negative emotions". The well-being dimension consists of sub-parameters such as "positive emotions, negative emotions, life satisfaction, vitality, optimism, resilience, autonomy, meaningful and purposeful activities, relationships". Low scores in optimism, autonomy, meaningful and purposeful activities, and relationships have positive meaning. High scores in the resilience parameter have negative meaning. These parameters are answered as “agree” or “disagree”. In general life satisfaction, the child indicates where his/her life is on a ladder with steps between 0-10. In general happiness, the child chooses one of the facial expressions, these are scored between 1-5 and a high score indicates that the child is happy. The positive and negative emotions part includes 5 different options for each question as “never, one day, a few days, most days, and every day” and is scored between 1-5. A high score for positive emotions and a low score for negative emotions indicate a positive state of well-being. The scoring of most parameters is different from each other. The parameters with a total score of 5 are positive emotions 1, negative emotions 1 and vitality parameters. The parameter with a total score of 3 is life satisfaction parameter. The parameter with a total score of 2 are optimism, resilience, autonomy, meaningful and purposeful activities, and relationships. The total score of the positive emotions parameter is 25, and the total score of the negative emotions parameter is 20 (38).
Child Life Habit Questionnaire: This questionnaire was developed by Noreau et al. (41) in 2002. It is a form consisting of 12 groups under the main headings of “nutrition, physical fitness, personal care, communication, accommodation, mobility, responsibilities, interpersonal relations, social life, education, work, recreation” and containing a total of 64 questions with a total score of 10. For each life habit, it is required to answer two questions: Level of success and type of assistance. In this form, which is a special scoring method, a high score has a positive value in terms of the child’s participation in the activity (41). The translation of the questionnaire was done in accordance with the Beaton principle (40). Considering that the children did not have any working activities, the “work” parameter of the life habit form was not included in the study.
Data Collection Method
The data were collected by the researcher between September 2019 and January 2020, using the face-to-face interview technique with children in whom treatment was started at Hacettepe University Oncology Hospital and who were hospitalized. Child and Parent introduction forms were filled by the researcher with the help of the parents through face-to-face interview technique.
Ethical Aspect of Research
The children participating in the study and their parents were informed about the purpose of the study and a signed informed consent form was obtained from the parents. The study was approved by the Hacettepe University Non-interventional Clinical Research Ethics Committee (GO/677).
Evaluation of Data
The SPSS 17.00 program was used for statistical analysis of the data. Variables determined by measurement were expressed as mean ± standard deviation. Percentage (%) was calculated for variables determined by counting. The normal distribution of the variables was examined with the Kolmorov-Smirnov test. “Pearson correlation coefficient” was used to examine the relationship between life habits, fatigue and well-being, all of which had normal distribution Statistical significance level was accepted as p<0.05. The coefficient strength of the correlation and the level of relationship were as follows: 0.00-0.25 very weak, 0.26-0.49 weak, 0.50-0.69 moderate, 0.70-0.89 high, 0.90-1.0 very high (42).
Results
The mean age of the children participating in the study was 11.25±3.04 years (minimum 5; maximum 15 years), and the mean age of their parents was 40.20±7.31 years. It was determined that 55% of the children were girls, 60% were attending secondary school, 65% had good school success, and 80% knew the diagnosis of the disease. It was determined that 45% of the parents were primary school graduates, 15% were self-employed, 70% received minimum wage, and 85% had nuclear family type (Table 1).
The mean score of the participants in the 24-Hour Child Fatigue Scale (29.40±9.42) was found to be moderate (Table 2).
In the Child Well-being Assessment of the children participating in the study, their general life satisfaction (7.40±2.45) was found to be above the average, and their general happiness (3.85±1.03) was at a moderate level. In the title of Positive and Negative Emotions; the scores of negative emotions 1 (3.05±0.60) and negative emotions 2 (12.40±2.56) parameters were more than moderate level, the scores of positive emotions 1 (3.70±0.57) and positive emotions 2 (14.40±3.83) parameters were found to be less than moderate level (Table 3).
In the Life Habits Form, the score of personal care parameter (4.85±2.84) was below the average. The scores of mobility parameter (5.14±3.43), social life parameter (5.66±4.69), recreation parameter (5.40±2.19), and accommodation parameter (5.35±2.74), which included the individual’s domestic activities, were found to be at moderate level (Table 4).
There was no significant relationship between the descriptive characteristics of the children and their fatigue and well-being (p>0.05). However, a moderate correlation was found between the age and education level of the children and the nutrition, communication and responsibility steps of their life habits and between the school success of the children and the personal care and communication parameters of their life habits (p<0.05) (Table 5).
There was a moderate negative correlation between fatigue and life habits parameters such as personal care, accommodation and mobility (p<0.05). When the well-being of the children was examined, a weak positive correlation was found between positive emotions 1 and recreation parameter, and between optimism and communication parameter (p<0.05). Again, a weak negative correlation was found between the autonomy parameter of children and personal care and social life (p<0.05). In addition, there was a weak negative correlation between the meaning and purpose parameter of children and nutrition and physical fitness, and a high level of negative correlation between the meaning and purpose parameter and communication (p<0.05), while a weak negative correlation was found between the negative emotions 2 parameter and mobility (p<0.05). In addition, a weak positive correlation was found between fatigue and negative emotions 1 parameter, a moderate negative correlation was found between fatigue and general life satisfaction parameter, and a weak negative correlation was found between fatigue and general happiness and positive emotions 2 parameters (p<0.05). These data showed that children’s strongest aspects were in communication, life satisfaction, vitality and optimism parameters (Table 6).
When the relationship between the introductory information of the parents and their living habits was examined, no relationship was found other than the age of the parents. There was a weak relationship between parental age and children’s responsibility for their life habits (r=0.46, p=0.04), and a moderate relationship between parent age and social life (r=0.56, p=0.01) (p<0.05). A weak correlation was found between family income and well-being and positive emotions 1 (r=-0.49, p=0.02) and negative emotions 1 (r=046, p=0.03). There was a weak correlation between the number of children of parents and positive emotions 1 (r=0.44, p=0.04), while the number of children of parents and negative emotions 1-2 (r=-0.50, p=0.02; r=-0.48, p=0.03, respectively) parameters were moderately correlated (p<0.05).
Discussion
Conclusion
As a result, our study revealed important parameters that might hinder the life habits, thus daily activities and social roles of Turkish children with cancer. Our study showed that fatigue was an important finding of cancer and its important effects on living habits and well-being should not be ignored.
Ethics
Ethics Committee Approval: The study was approved by the Hacettepe University Non-Interventional Clinical Research Ethics Committee (GO/677).
Informed Consent: The children participating in the study and their parents were informed about the purpose of the study and a signed informed consent form was obtained from the parents.
Peer-review: Externally peer reviewed.
Authorship Contributions
Concept: S.S., S.Ş., B.S.A., Design: S.S., B.S.A, Data Collection or Processing: S.S., Analysis or Interpretation: S.S., B.S.A., Literature Search: S.S., Writing: S.S.
Conflict of Interest: No conflict of interest was declared by the authors.
Financial Disclosure: The authors declared that this study received no financial support.
References
relationships: Development during adolescence. In J. E. Grusec & L. Kuczynski (Eds.), Parenting and Children’s Internalization of Values: A Handbook of Contemporary Theory. Hoboken, NJ, US: John Wiley & Sons Inc 1997. p. 78-99