الفهرس 
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Abstract
Cancer is a potentially life‐threatening disease that is considered incurable in many cultures. It is not a single disease, but includes a variety of malignancies in which abnormal cells divide in an uncontrolled manner. These cancer cells can infest near tissues and can migrate by way of the blood or lymph systems to other parts of the body.
The International Agency for Research on Cancer (IARC) 2018, reported that, each year more than 300,000 children ages birth to 19 years are diagnosed with cancer around the world. Currently, more than 80% of children with cancer who are treated with modern multidisciplinary treatments in developed countries are cured.
In Egypt, childhood cancer is a growing concern for the society since its incidence has been increasing rapidly. Presently, according to the available statistics of National Cancer Institute 2015, total incident cases was increasing from 3662 cases to 4000 cases, approximately 9% of the young population below 20 years of age.
No doubt that, diagnosis and treatment of cancer among children represents a highly burden situation for parents emotionally, physically, socially and financially; so that the parents needed to cope effectively with illness of their children. Support services are seen as a benefit to children and their parents by encouraging individuals to live as well as possible. Generally, Support services means the provision of the necessary services for those living with or is affected by cancer patients to meet their physical, psychosocial, informational and spiritual needs during the diagnosis, treatment, follow-up phases.
Hence, this study was conducted to assess the support services provided to parents of children with cancer and their satisfaction from outpatient clinics and non-governmental organizations in Alexandria.
A descriptive cross sectional research design was used to conduct this study. It had been carried out in outpatient clinics and non- governmental organizations which provide services to children with cancer in Alexandria. Somoha University Hospital, Alexandria Pediatric Oncology Center and Ayady Al-mostakbal Hospital.
The present study sample included a total 450 parents of the children with cancer who receive treatment they are selected by using proportional allocation method.
Tools of study
Three tools were used in this study. The first tool: Parents and children’s socio-demographic characteristics and child health profile structured interview schedule. It includes three parts: socio- demographic characteristics of the parents and socio- demographic characteristics of the children / health history of the children. The second tool: Support services provided to parents of children with cancer structured interview schedule. It includes six parts: physical, information, technical, psychosocial, economic and services for caring of the child. The third tool: Parent’s satisfaction scale for support services provided by health settings. It includes six parts: physical, information, technical, psychosocial, economic and services for caring of the child.
Approvals were obtained for conducting the study at the specified settings. A pilot study was carried out on 45 parents representing (10% of total sample) to test the feasibility of the study as well as to ascertain the clarity, applicability and comprehensiveness of the tools. The data collection took six months (from the beginning of September 2018 to the end of February 2019) and then the relevant descriptive and analytical statistics were performed
The main findings obtained from the study were as follows:
Parents and children’s socio-demographic characteristics and child health profile:
Part I: Socio- demographic characteristics of the parents:
- More than half (59.3%) of parents aged from 25 to 40 years with a mean of 38± 9.5 years.
- Less than three-quarters (72.4%) of the parents were females.
- More than three quarters (76%) of the parents were living in rural areas.
- The most of the parents (83.1%) were married
- More than one quarter (27.3%) of the parents could just read and write.
- Less than two thirds (62.4%) of the parents were not working,
- More than half (56.0%) of the parents reported that their income was not enough.
- Relationship to the child, more than three-quarters (76.0%) of the parents were mothers.
- The majority (90.4%) of the parents were spending less than three hours to reach the hospital with a mean of 2.16 ± 1.41 hours.
- The majority (94.7%) of them didn’t need to stay anywhere when attend to the hospital.
- More than two thirds (70.2%) of the parents were spending more than 12 hours in caring for their children with a mean of 16.57± 5.88 hours.
Part II: Children’s socio-demographic characteristics.
- More than half (58.9%) of the children were males.
- Less than half (45.8%) of the children were in the age group ranged from 5 to less than 11 years with a mean of 8.44± 4.04years.
- More than half (59.1%) of the children had one sibling with a mean of 2.35± 0.89 siblings.
- Nearly half (43.4%) of the children were ranking the third child.
- Less than half (48.7%) of the children were in primary level of education.
- More than one third (38.3%) of the children had moderate academic achievement.
- Less than two thirds (63.7%) of the children were absent from school for 1-6 months with a mean of 2.96±0.782 month.
Part III: The child health profile.
- One third (33.3%) of the children had leukemia.
- More than two thirds (68%) of the children were diagnosed from less than one year.
- More than three quarters (76.4%) of the children were receiving chemotherapy.
- More than three quarters (79.1%) of the children had complications as a result of treatment.
- One third (35.4%) of the children had anemia.
- The majority (92.9%) of the children had follow up rate ranged from one week to less than four weeks with a mean of 1.07±1.0 weeks.
- Less than two thirds (60.9%) of the parents didn’t know the expected duration of the treatment.
Support services provided to the parents of children with cancer.
Part (1): Personal (physical) support services provided to the parents of children with cancer.
- The majority (92.2%) of the parents reported that the hospital have suitable facilities.
- The majority 90.9% of the parents stated that the waiting areas were suitable.
- More than three quarters (77.8%) of them mentioned that there is a place in the hospital that they can get food.
- Less than two thirds (60.0%) of them stated that the transportations to and from the hospital were suitable for them.
- Less than one third (30.2%) of them confirmed on the presence of temporary residence for the parents of expatriate children next to the hospital.
- Only 7.1% of them stated that there was someone who can stay with their children until the parents meet their needs,
- Only 3.6% of them reported that there was someone who takes care of the children in clothing and food.
- Only 0.9% of them reported that there was someone who can help them to take rest and relaxation.
Part (II): Support services for obtaining information and communicating.
- The majority (93.6%) of the parents expressed that the health status of their children had been clarified, while 93.3% of the parents stated that they got information about their children’s illness.
- Most (87.8%) of the parents mentioned that they received information about methods of cancer treatment. more than three quarters (81.1%) of the parents received information about the results of the diagnostic procedures performed to their children.
- Slightly more than three quarters (79.8%) of the parents stated that they received information about the causes of the diagnostic procedures performed to their children.
- More than three quarters (78.2%) of the parents were aware of the follow-up date required for the children’s situation, more than three quarters (77.6%) of them reported that they received information about telephone numbers in which they can request health support or advice as needed.
- More than two thirds (72.0%) of them reported that they received information about the side effects of cancer treatment and how to deal with it.
- Nearly two thirds (66.0%) of the parents had been told where, when and how to seek assistance when their children need that
- About (56.9%) of the parents were received information about the potential problems after the treatment terminated, (55.3%) of them received information about the expected symptoms when their children’s condition changes to better or worse, 30.0% of them received information about the transportation to and from the hospital.
- Less than one third (29.3%) of them expressed that the disease has been explained in a way that their children can understand.
- About one quarter (25.8%) of them reported that they received information regarding the presence of courses, programs and scientific assistance provided to them, about one fifth (20.2%) of them reported the presence of courses on the side effects of treatment and prevention provided to the parents, only 15.8% of them stated that they had a chance to participate in the decisions concerning their children’s situation.
- About (13.6%) of the parents reported the presence of educational material and boards to explain the disease in the hospital, while (13.1%) of the parents reported the presence of treatment methods and side effects, and 9.3% of the parents reported the presence of screens in the waiting areas to inform them on the definition, treatment, prevention of the disease and printed information on cancer, treatment and symptoms.
- Only 4.7% of them obtained information on the long-term effects of cancer treatment and its impact on the child. Only 2.4% of them obtained information about alternative method of cancer treatment.
Part (III): Technical support services provided by the medical team.
- The majority (95.3%) of the parents stated that the medical team provided all measures to reduce the pain of the children.
- The majority (91.3%) of the parents mentioned that the medical team provided all measures for the welfare of their children.
- More than three quarters (76.9%) of the parents stated that the medical team prepared their children during treatment, while (66.2%) of the parents stated that the medical team prepared their children during laboratory tests and examination.
- More than half (52.2%) of the parents were receiving training from the medical team on how to deal with the side effects of treatment. Slightly more than two fifths (42.2%) of the parents were received training from the medical team to assess the children’s situation and deal with them at home.
- Nearly one third (32.2%) of the parents reported that the medical team had prepared the parents while their children receiving the treatment, less than one third (30.4%) of them were received training from the medical team to help their children to do their daily activities.
- More than one quarter (28.2%) of the parents were prepared by the medical team during laboratory tests and examination performed for their children.
Part (IV): Psychosocial and spiritual support services provided to the parents.
- More than half (53.3%) of the parents stated that they received external support services which help in providing encouragement and emotional support for them and for their children, nearly one third (33.6%) of the parents reported the presence of support group to talk with other children with cancer.
- Nearly one fifth (18.2%) of the parents mentioned the presence of specialists who were talking with them and understanding their negative feelings, only 17.8% of the parents reported the presence of someone who follows their emotional needs and speaks with them to calm them down.
- Only (9.6%) of the parents stated the presence of social and psychosocial follow-up from the hospital to parents of children, while (8.2%) of them stated the presence of support group who follow the homework of other children in case the parents are not at home.
- Only 1.8% of the parents were taking exercises on how to deal with grief and anxiety which they may experience, while 1.3% of them were received training on how to deal with the acute psychosocial situations that their children may be exposed to.
- Only 0.7% of the parents received training on how to deal with acute psychosocial situations that they may be exposed to, similar percent (0.2%) of them mentioned the presence of cleric in the hospital team that they can deal with them if necessary, or to speak with them about faith and patience.
- None of the parents had reported the presence of trips for them or for their children are arranged with the clergy as a kind of spiritual support.
Part (V): Economic support services provided to the parents.
- The majority (89.3%) of the parents stated the presence of economic services and assistance for the necessary tests for their children. However, 88.7% of them mentioned the presence of economic services and assistance for purchasing of medications for their children, most (85.6%) of them reported the presence of economic support for their children with cancer.
- Only 3.1% of the parents mentioned that the economic assistance places were announced; only 2.0% of them perceive the presence of economic services and assistance to cover the additional expenses.
- None of the parents had reported the presence of economic services and assistance for their traveling to and from hospital.
Part (VI): Support services provided for the care of children.
- Nearly three quarters (71.6%) of the parents stated the presence of nutrition specialists within the hospital, who provided a balanced diet for their children.
- More than two thirds (68.0%) of the parents reported that the hospital provided activities to be carried out by their children, nearly two thirds (62.4%) of them mentioned the presence of volunteers to help them and their children.
- Only 13.6% of the parents mentioned the presence of trained team to fulfill the emotional needs of their children to calm them, only 6.9% of them reported the presence of psychologists to understand and control their children’s behavior.
- None of the parents had reported the presence of someone to help their children in studying their lessons.
The total score of support services provided to the parent of children with cancer.
- The most (83.8%) of the parents stated that the support services provided to them are inadequate.
- About 16.2% of the parents stated that the support services provided to them are partially adequate.
- None of the parents had stated that the support services provided to them are adequate.
Part VII: Satisfaction of the parents regarding support services:
- Less than two thirds (65.8%) of the parents were partially satisfied with support services provided to them.
- Around one third (34.0%) of them were not satisfied with support services.
- Only 0.2% of them were satisfied with support services provided to them.
Part V: Relation between satisfaction of parents of children with cancer and their socio-demographic characteristics, place of treatment, provided services and medical history of their children.
- No statistical significant difference was found between place of treatment, residence and occupation of the parents and their satisfaction regarding the provided support services
- A statistical significant difference was found between gender of the parents and their satisfaction (X2= 13.08, P=0.001).
- A statistical significant difference was found between the age of the parents and their satisfaction regarding provided support services (X2= 18.81, P =0.001).
- A statistical significant difference was found between marital status of the parents and their satisfaction (X2= 19.31, P =0.001).
- A statistical significant difference was found between educational level of the parents and their satisfaction (X2=41.86, P =0.001).
- A statistical significant difference was found between family income and satisfaction of the parents (X2=11.88, P =.003).
- No statistical significant difference was found between place of treatment and parents’ satisfaction regarding provided physical, informational and psychological support services.
- A statistical significant difference was found between place of treatment and parents’ satisfaction regarding provided technical, economic support services and services provided for caring of the child (X2=26.20, P = 0.000, X2=45.86, P = 0.000, X2=14.193, P = 0.004 respectively).
- No statistical significant relation was found between gender of the parents and their satisfaction regarding provided physical, informational and psychological support services and services for caring of their children.
- A statistically significant relation was found between gender of the parents and their satisfaction regarding to provided technical and economic support services (X2=12.31, P = 0.002, X2=16.93, P = 0.000 respectively).
- No statistical significant difference was found between age of the parents and their satisfaction regarding provided physical and psychological support services and services for caring of their children.
- A statistically significant relation was found between age of the parents and their satisfaction regarding provided information, technical and economic support services (X2=18.55, P = 0.001, X2=34.44, P = 0.000, X2=30.08, P= 0.000 respectively).
- No statistical significant difference was found between residence of the parents and their satisfaction regarding provided physical, psychological and economic support services and services for caring of their children.
- A statistically significant relation was found between residence of the parents and their satisfaction regarding provided informational and technical support services (X2=10.81, P = 0.01, X2=29.64, P = 0.00 respectively).
- No statistical significant difference was found between marital status of the parents and their satisfaction regarding provided physical and psychological support services and services for caring of their children.
- A statistically significant relation was found between marital status of the parents and their satisfaction regarding provided informational, technical and economic support services (X2=31.05, P = 0.000, X2=19.16, P = 0.001, X2=14.26, P = 0.005 respectively).
- No statistical significant relation was found between education of the parents and their satisfaction regarding provided support services for caring of their children.
- A statistically significant relation was found between education of the parents and their satisfaction regarding provided physical, informational, technical, psychological and economic support services (X2=43.10, P = 0.000, X2=45.42, P = 0.000, X2=58.24, P = 0.000, X2=15.16, P = 0.02, X2=36.49, P = 0.000 respectively ).
- No statistical significant difference was found between occupation of the parents and their satisfaction regarding provided physical, psychological and economic support services and services for caring of their children.
- A statistically significant relation was found between occupation of the parents and their satisfaction regarding provided informational and technical support services (X2=11.58, P = 0.02, X2=32.58, P = 0.000 respectively).
- No statistical significant difference was found between income of the parents and their satisfaction regarding provided physical and psychological support services.
- A statistically significant relation was found between income of the parents and their satisfaction regarding provided informational, technical, economic support services and services provided for caring of the child (X2=33.24, P = 0.000, X2=51.27, P = 0.000, X2=9.31, P = 0.04, X2=4.62, P = 0.03 respectively ).
- No statistical significant difference was found between medical history of the children and their parents’ satisfaction regarding period since the children were diagnosed, complications resulting from the treatment received and the follow-up rate of the children.
- A statistically significant relation was found between the children’s diagnosis and their parents satisfaction (X2=42.5, P = 0.001).
- A statistically significant relation was found between the children’s treatment type and their parents’ satisfaction (X2=12.13, P = 0.04).
- A statistically significant relation was found between the children’s current complaints and their parents’ satisfaction (X2=44.54, P = 0.004).
- A statistically significant relation was found between the children’s expected the duration of treatment and their parents satisfaction (X2=30.36, P = 0.000).
- No statistical significant relation was found between gender of the child and their parents’ satisfaction regarding provided physical, informational, technical, economic and psychosocial support services and services for caring of the children.
- No statistical significant difference was found between age of the child and their parents’ satisfaction regarding provided physical and psychosocial support services and services for caring of the children.
- A statistically significant relation was found between age of the children and their parents’ satisfaction regarding provided information, technical and economic support services (X2=28.5, P = 0.000, X2=13.0, P = 0.04, X2=23.0, P = 0.000 respectively).
- No statistical significant difference was found between the diagnosis of the child and their parents’ satisfaction regarding provided technical and psychosocial support services and the services for caring of the children.
- A statistically significant relation was found between diagnosis of the children and their parents’ satisfaction regarding provided physical, information and economic support services (X2=16.3, P = 0.03, X2=18.32, P = 0.01, X2=37.3, P = 0.000 respectively).
- No statistical significant difference was found between the children’s treatment and their parents’ satisfaction regarding provided information, psychosocial and economic support services.
- A statistically significant relation was found between treatment type of the children and their parents’ satisfaction regarding provided physical, technical support services and services for caring of the child (X2=28.1, P = 0.01, X2=19.1, P = 0.004, X2=13.8, P = 0.03 respectively).
- No statistical significant difference was found between occurrence of complications of child and their parents’ satisfaction regarding provided physical, psychosocial and economic support services and services for caring of the children.
- A statistically significant relation was found between occurrence of complications of the children and their parents’ satisfaction regarding provided information and technical support services (X2=14.8, P = 0.001, X2= 18.7, P = 0.000 respectively).
Part VI: Correlations between support services and parents satisfaction.
- No statistical significant relation was found between provided psychosocial support services for the parents and their satisfaction.
- A statistically significant relation was found between the provided physical support services for the parents and their satisfaction (X2=60.75, P = 0.000).
- A statistically significant relation was found between the provided information support services for the parents and their satisfaction (X2=147.85, P = 0.000).
- A statistically significant relation was found between the provided technical support services for the parents and their satisfaction (X2=121.79, P = 0.000).
- A statistically significant relation was found between the provided economic support services for the parents and their satisfaction (X2=176.63, P = 0.000).
- A statistically significant relation was found between the provided services for caring of the children and their parent’s satisfaction (X2=4.79, P = 0.04).
- There is positive statistical correlation and highly significant difference between the provided support services for parents of children with cancer and their satisfaction (r = 0.66, p = 0.000).
- The ranking of support services were higher in the information, economic, physical support services and services for caring of the child. On the other hand, the support services were lower in the psychosocial and technical support services.
- The ranking of satisfaction levels were higher in the technical, information, psychosocial and economic support services. On the other hand, the ranking of satisfaction levels were lower in the services for caring of the child and physical support services.
Based upon the results of the current study, it could be concluded that:
Most of the studied parents had inadequate support services and less than one fifth of them had partially adequate support services. The most adequate service was information support services and the least adequate service was technical support services.
It can also be concluded that less than two thirds of the parents were partially satisfied with the provided support services and around one third of them were not satisfied with the provided support services. Parents were most satisfied by technical support services and the least satisfied by physical support services.
In light of the present study findings, the following recommendations could be made:
• Involve parents and their siblings in educational programs concerning management of cancer and its side effects.
• Perform interview to assess parents’ satisfaction level as well as their suggestions for improvement.
• Develop a specific supportive care programs to provide care and support for parents and their children based on continuous assessment for parents’ needs.
• Develop supportive care guidelines and stander for the needed support services based on the actual assessment parents’ needs.
• Offer unit responsible for health education in each zone that provide care through qualified and trained health care provider.
• Collaborate with the pediatric oncologist, psychiatrist, and clergy care provider (religious men) to provide counseling to help the parents to deal with stressful situations, and fulfill the spiritual need for them.
• Enhance the use of new technologies like internet and social media (SMS, WhatsApp, Skype, and Facebook) in disseminating healthy messages about support services.
• Collaborate and coordinate between governmental organizations and nongovernmental organization in order to raise the public awareness regarding support services and its importance for parents and their children.
Recommendations for further researches:
• Study the impact of educational program on improving support services provided for parents of children with cancer.
• Develop guidelines and protocols regarding support services provided to parents of children with cancer.