• Asian Pacific Journal of Cancer Prevention
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• v.17 no.4
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• pp.1717-1723
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• 2016

Background: This study assessed parental experiences with chemotherapy-induced alopecia among children with cancer treated at an Indonesian academic hospital. Materials and Methods: Fifty parents of childhood cancer patients were interviewed using semi-structured questionnaires. Results: The moment that hair fell out was the moment that parents (84%) had to admit their child had cancer. Alopecia was a traumatizing painful experience (46%). Active strategies to hide alopecia, mainly hats, were used by 66% of children, while 34% never covered their bald head. If money had not been an issue, 40% would use another strategy. Alopecia made children limit outdoor daily activities (78%) and engagement with others (60%). Significantly more children from high-educated (95%) than low-educated (60%) parents received sympathy from other people (P=0.012). Significantly more Christian (29%) than Muslim (0%) families confirmed that alopecia lowered the quality of life (P=0.046). Most parents (82%) had no prior plans about alopecia management, yet for significantly more girls (26%) than boys (0%) such plans existed (P=0.044). Parents received most information about alopecia from other parents (66%). Parents (92%) needed more alopecia education from doctors. Of all school-attending children, 53% were bullied and 47% did not want to attend school due to alopecia. Significantly more high-educated than low-educated families received pity from teachers and pupils (94% vs. 0%, P=0.004), and acceptance by pupils (81% vs. 0%, P=0.021). Conclusions: Alopecia is a severe, far-stretching side-effect of chemotherapy with physical, psychological and social consequences for children and parents. Parents should be better informed about occurrence and impact of alopecia. Extra attention is required to facilitate children's return to school. Healthcare providers should facilitate optimal supportive care through open dialogue and provision of educational m aterials for parents, children and their community.

• Korean Journal of Hospice Care
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• v.5 no.2
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• pp.54-63
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• 2005

The purpose of this study is to examine the requirement for child life support specialist and fetal education for children with cancer. This research presented was composed with three chapters : First chapter, I presented the purpose, scope and definitions of this research. Second chapter, I defined about hospice care service for children with cancer and kind of pediatric cancer. And general characteristics of children with cancer, a understanding character of death and dietary therapy. Lastly, I defined and investigated about spiritual care. Third chapter, I concluded with some of findings and final suggestions based on the results. According to the developmental stages children with cancer are disability of communication competence and more dependence on their parents, therefore parents' decision making were more difficulty. And parents with a child who suffers from a cancer needs a counseling in order to discover the meaning of life. Parents' psychological experience about the caring for their child suffering from pediatric cancer was equal to broken hearts due to shadow of the child's death from time to time. In other words a parents with a child who suffers from a cancer needs comprehensive services such as hospice, consultor as well as wide experienced pediatrician and nurse. Child life support specialist can help them recover and improve their o주 potential strength in behalf of overcoming their difficulties. And pastoral counseling can help them reduce the fear and anxiety about unknown world and death. The systematically developed a school-based counseling program would help children adjust to the difficulties after a perfect cure because of children adjusted to school well when they have good peer relationships.

• Child Health Nursing Research
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• v.11 no.2
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• pp.229-239
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• 2005

Purpose: The objective of this study was to provide an understanding of the difficulties for facing parents of children with terminal cancer. Method: The design of this study was an inductive and descriptive study. Thirty???]one parents of children with terminal cancer participated in???]depth were interviewed s. C in depth and content analysis was used for analyzing the data. Results: The main categories in the findings were 'difficulties in coping', 'physical and psychological suffering of children', 'suffering of family', 'bereavement with children', 'economic problems', 'incurable situation', 'preparation of death', 'social isolation', 'coping after a child dies', 'spiritual problems', receiving active treatment', 'informing children of their condition', 'a sense of meaninglessness', 'emotional iunstability', and 'giving up hope'. Conclusion: The main point identified from this result in this study was that parents who have a child with terminal cancer don't never give up the hope of recovery for their child even when the child is in by the terminal stage of their children, even though and they are unwillingly to prepare for their child's death. This is a unique characteristic in the attitude of the families' attitude in child hospice care and differs from that found in adult hospice care. This result can be used as an important guide for nurses to in assessing the parents' needs in the terminal care setting.

• Child Health Nursing Research
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• v.28 no.3
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• pp.208-217
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• 2022

Purpose: This study investigated childhood cancer survivors' behavior related to a healthy lifestyle during their survival period by comparing reports between childhood cancer survivors and their parents. Methods: In this comparative descriptive study, a survey was conducted with a 33-item questionnaire and one open-ended question about areas for improvement. The participants comprised 69 childhood cancer survivors and 69 of their parents, for a total of 138. Results: The total mean healthy lifestyle score, on a 4-point Likert scale, reported by childhood cancer survivors was 2.97, while that reported by their parents was 3.03. No significant differences in children's healthy lifestyles were found between childhood cancer survivors' and their parents' reports (t=0.86, p=.390). For the open-ended question, the main keywords based on the results of degree and eigenvector centrality were "exercise", "unbalanced diet", and "food". These keywords were present in both the children's and parents' responses. Conclusion: Obtaining information on childhood cancer survivors' healthy lifestyles based on reports from themselves and their parents provides meaningful insights into the improvement of health care management. The results of this study may be used to develop and plan healthy lifestyle standards to meet childhood cancer survivors' needs.

• Korean Journal of Hospice Care
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• v.6 no.2
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• pp.1-9
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• 2006

In this thesis, Chapter I Introduction suggested the necessity of this research and defined related terms, and Chapter II defined hospice for children and examined the symptoms of pediatric cancers as well as the general characteristics of pediatric cancer patients. In particular, we surveyed the physical condition, psychological and emotional condition, financial condition, environmental aspect, educational aspect and spiritual aspect of pediatric cancer patients’ families, investigated pediatric cancer patients’ parents and siblings with regard to their understanding of the pediatric cancer patients’ death, and lastly considered spiritual care. Chapter III presented summaries and conclusions. In their developmental stage, pediatric cancer patients lack abilities to express themselves and are highly dependent on their parents, so parents who take care of cancer children have to make hard decisions and cancer children’s families are heavily burdened by the situation of preparing their children’s death and sending them away while denying their death, and for this reason they need help from specialists. That is, for pediatric cancer patients, we need highly experienced pediatricians or nurses skilful in managing young terminal patients as well as hospice counseling and family counselors for consulting on family crises. In particular, there is a keen need of child life support specialists. In addition, clergymen’s help is critical for spiritual care to ease the fear and terror of the unknown world, fear of death, etc. Moreover, in order to prevent cancer children from failing to adjust themselves to school life or peer relation after recovery, hospice service should provide cancer children with opportunities to learn school curriculums and associate with friends.

• Asian Pacific Journal of Cancer Prevention
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• v.14 no.11
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• pp.6833-6838
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• 2013

The purpose of this descriptive study was to determine the hopelessness and depression levels of parents of children diagnosed with cancer and undergoing cancer treatment and factors affecting these levels. The study was carried out with parents of 44 children receiving treatment in a paediatric haematology clinic of a university hospital. Data were collected using a survey form, the Beck Hopelessness Scale (BHS) and the Beck Depression Scale (BDS). The mean BDS score of the mothers and fathers was $18.3{\pm}11.30$ and $15.2{\pm}11.33$, respectively. The mean BHS score of the mothers was $6.45{\pm}4.40$, whereas the mean BHS score of the fathers was $5.88{\pm}4.27$. The results showed that the levels of hopelessness and depression among the mothers were higher than among the fathers (p<0.001). There was a positive relationship between the hopelessness and depression scores of the mothers and the fathers (p<0.05), and the levels of hopelessness and depression scores of the fathers increased as those of the mothers increased. A weak financial situation of the family increased the hopelessness and depression levels of the fathers. The hopelessness and depression levels of the mothers who were supported by their families and relatives were decreased compared to those without such support (p<0.05). The results show that the parents of children with cancer face many psychosocial and spiritual problems. Using simple screening tools, nurses can identify at-risk parents and direct them to support services. We conclude that actively encouraging families to avail themselves of support resources and supporting them financially would positively affect the levels of depression and hopelessness of parents of children with cancer.

• Child Health Nursing Research
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• v.4 no.2
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• pp.274-285
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• 1998

Improvements in therapy have resulted in increasing numbers of children being successfully treated for cancer. However the agrressiveness of therapy & uncertainty about prognosis are associated with many adverse effects, psychological as well as physical for both the child & family. The purpose of this study were to measure the degree of perceived uncertainty, self-efficacy & coping, and then to examine the relationship between the perceived uncertainty, self-efficacy & coping in parents of children cancer patients. The subjects of this study consist of 140 parents with pediatric cancer, registered at pediatric cancer ward & Out Patient Department. Data was collected from July 1st to August 15th 1998. The tools used in this study were Mishel's the Parents' Perception of Uncertainty Scale (28 item, 4 likert scale), Shere's Self-Efficacy Scale (17 item, 5 likert scale) & Folkman & Lazarus Ways of Coping Checklist(34 items, 4 likert scale). Data was analyzed by t-test, Anova, Pearson Correlation coefficient. Results of this study are summerized as follows 1. Parents perceived their uncertainty to be slightly high(Mn 2.41). The degree of perceived uncertainty by the four components were followed as lack of clarity (2.60), unpredictability(2.59), ambiguity(2.51) & lack of information(1.90). The degree of perceived uncertainty of parents with pediatric cancer revealed to be influenced significantly by the family outcome, reliability about health care provider & perceived severity of illness. 2. The range of parents' self-efficacy was measured iron 35 to 85 point, so revealed slightly high. The degree of self-efficacy related to be Influenced signiicantly by the sequency of child birth, family religion & degree of perceived support. 3. The degree of parents' coping was measured slightly high (Mn 2.78). The degree of coping related to be influnced significantly by the sequency of child birth, number of sible & degree of perceived support. 4. parents' uncertainty was related inversely to the parents' self-efficacy(r=-.38, p<.001) & coping(r=-.26, p<.001). And also parents' self-efficacy was positively related to coping(r=.56, p<.001) From the above results, it can be concluded that predicting & controlling parents' uncertainty with children cancer are necessary to improve positive coping strategies. This information may be used as a foundation for developing nursing interventions to decrease perceived uncertainty & to foster self-efficacy & coping for parents with children cancer.

• Child Health Nursing Research
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• v.7 no.4
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• pp.494-510
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• 2001

As a family respond to any stressful situation as a whole system, cancer diagnosis of a child, as a serious life event, could be emotional shock to destroy homeostasis of the family system. A family has a resilient capacity to adjust and adapt to stressful events. Previous studies have been focused on family stress and adaptation, but little attention has been given to family value as one of resilient factors. The data for model testing were collected from July 18, 2000 to August 30, 2000 and the analysis included 309 parents of children who are diagnosed as cancer, 18 or less years of age, and treated either hospitalized or at the outpatient clinics. The data analysis utilized SAS 6.12 and LISREL 8 for descriptive statistics, correlation, cluster analysis, factor analysis, and LISREL. The study findings are as follows. 1) Monthly income (γ=-0.28, t=-5.81) was the most important factor to explain family strain along with family support (γ=-0.11, t=-2.43), severity of children's illness (γ=0.26, t=5.22), and family stressor (γ=0.22, t=4.62). All of these factors together explained 40％ of variance in family strain. 2) Among general family value, the relationship with the parents (γ=0.28, t=4.89) and relationship with the children (γ=0.20, t=3.60) showed positive effects to family value for cancer children, while relationship with the spouse (γ=-0.19, t=-3.22) and the age of the cancer children (γ=-0.11, t=-2.21) showed negative effects. These predictors together explained 22％ of variance in family value for cancer children. 3) Family hardiness was explained mostly by family strain (γ=-0.53, t=-8.65) along with direct negative effects of family persistency and indirect negative effects of severity of children's illness, family stressor, relationship with the spouse, and the children's age. Family value for cancer children was the most important predictor with positive effect (γ=0.44, t=6.76) along with indirect effects of monthly income, relationship with the parents, relationship with the children, support from family and significant others, and confidence with the health professionals. 51％ of variance in family hardiness was explained by all of these predictors. 4) The most important predictor for family adaptation was family stressor (γ=-0.50, t=-6.85) with direct and indirect negative effects along with the severity of children's illness (γ=-0.27, t=-5.21). However, family value for cancer children showed compromised total effect (γ=-0.13, t=-1.99) with negative direct effects (γ=-0.28, t=-3.43) and positive indirect effects (γ=0.14, t=3.01). Similarly, confidence with the health professionals also showed compromised total effect (γ=0.09, t=1.99) with positive direct effects and negative indirect effects. Family hardiness showed the biggest positive direct effects while other factors such as monthly income, family stressor, family persistence, support of family and significant others, relationship with the parents, relationship with the children, and relationship with the spouse, and children's age showed indirect effects only. 39％ of variance in family adaptation was explained by all of these predictors.

• Child Health Nursing Research
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• v.15 no.3
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• pp.325-333
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• 2009

Purpose: This study was done to investigate the cognition and needs for hospice care among.parentsofchildrenwith cancer. Methods: The participants were 73 parents of children with cancer. Data were collected through self-report questionnaires and analyzed using the SPSS/WIN Program. Results: Less than half of parents (49.3%) told the child about the disease. If the child could not be treated medically, 39.5% of the parents answered that they would have the child treated in a hospital until his/her last days, while 62.8% of the parents replied that it would be. appropriate for the child to get hospice care when all medical treatments for the child failed, or when the end of the child's life was near. Needs for hospice care for the parents were high, and the physical care of the child ranked as the most important. Conclusion: The above findings indicate that the parents were not cognitive enough about hospice care, but needed hospice care,especially as it is related to the physical care of the children. Therefore hospice care, based on cognition and needs of parents, should be provided for children and their families.

• Asian Pacific Journal of Cancer Prevention
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• v.17 no.7
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• pp.3235-3242
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• 2016

Background: Complementary alternative medicine (CAM) use in children with cancer is widespread. Health-care providers (HCP) need to acknowledge and address this need. This study explored and compared perspectives on CAM of HCP and parents of young patients with cancer in Indonesia. Materials and Methods: We conducted a cross-sectional study using semi-structured questionnaires in HCP and parents of childhood cancer patients at an Indonesian academic hospital. Results: A total of 351 respondents participated: 175 HCP (response rate 80%) and 176 parents (response rate 80%). Parents were more likely than HCP to think that chemotherapy can cure cancer (80% compared to 69%, P=0.013). Nearly half of all parents (46%) and HCP (45%) doubted whether CAM can cure cancer. Parents were more likely than HCP to think that CAM can be helpful in childhood cancer treatment (54% compared to 35%, P=0.003). The most recommended CAM by HCP was self-prayer (93%). Reasons for recommending CAM were: hope for improvement of the child's condition (48%), patient wants to stop treatment (42%). Most discouraged CAM by HCP was by old-smart people (70%), the reasons being: lack of evidence for usefulness (77%), lack of CAM knowledge (75%). The proportion thinking that patients were unlikely to raise the CAM topic if they perceived that doctors were skeptical was higher in parents than in HCP (52% versus 1%) (P<0.001). Most HCP (71%) and parents (77%) acknowledged that their knowledge about safety and efficacy of CAM was inadequate (P=ns). The proportion that wanted to learn or read more about CAM was higher among parents than HCP (48% compared to 31%, P=0.002). Conclusions: HCP and parents have different perspectives on CAM use in children with cancer. HCP should enhance their CAM knowledge and encourage open communication about CAM with parents. If doctors' skepticism is perceived, parents are unlikely to raise CAM as a topic.