الفهرس 
Overview about CancerOnly 14 pages are availabe for public view
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Abstract
Hospice care for children and young people is an active and total approach to care, from the point of diagnosis, throughout the child’s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the child or young person and support for the whole family, includes the management of distressing symptoms, provision of short breaks, care at the end of life and bereavement (Bally et al., 2019).
Hospice care of a patient focus on caring not curing. Hospice is the model of compassionate care for people facing death, hospice care involves a team-oriented approach to expert medical care, pain management, emotional and spiritual support expressly tailored to the patient’s needs and wishes. In hospice and palliative care, care given to patient the right to die pain free and with dignity, caregivers will receive the necessary support to allow provides hospice care to pediatric cancer patients at end stage of life (National Hospice Palliative Care Organization [NHPCO], 2016).
In hospice tasks undertaken by family caregivers can be identified as either direct or indirect care. Direct care encompasses tasks that are carried out with the patient directly, while indirect care tasks are done on behalf of the patient by the family caregivers, such as paying bills. The role of the family caregivers changes as the condition and treatment strategies of the patient change (Mahmoud & Elaziz, 2015).
This study aimed to
The aim of the current study is to assess the caregivers knowledge and practices regarding hospice care.
This aim can be achieved through the following objective
- Assess the caregiver’s knowledge regarding hospice care phase
- Assess the caregiver’s practices regarding hospice care phase for their children with cancer
- Assess the relationship between knowledge and practices of caregiver’s regarding hospice care for their children with cancer?
Research Questions
1. What is the caregivers knowledge regarding hospice care phase?
2. What are the caregivers practices regarding hospice care phase for their children with cancer?
3. What is the relationship between knowledge and practices of caregivers regarding hospice care for their children with cancer?
IV- Technical Design
Study Design
A Descriptive design was utilized for conduction of the current study.
Setting
This study was conducted at the Children’ Cancer Hospital Egypt 57357(CCHE) widely known as Hospital 57357 is a unique healthcare institution; (CCHE 57357) is the largest Hospital in the Egypt in terms of capacity (320 beds). It was established in 2007 with the mission of providing the best comprehensive family centered quality care and a chance for cure to all children with cancer seeking its services, free of charge and without discrimination including chemotherapy, radiotherapy, surgery, bone marrow transplant, multi-disciplinary clinics, physical rehabilitation, socio-psychological care, palliative/Hospice care, survivorship care and in-house schooling.
Sampling
A Purposive sample of pediatric caregivers cancer patients at the previously mentioned setting (100 caregivers), in a duration of 6 months.
Inclusion criteria
Caregivers of children in hospice phase, or with relapsed solid cancer were included in this study.
Exclusion criteria
1. Caregivers of children without confirmed diagnosis.
2. Caregivers of children undergoing cancer treatment (chemothyrapy, radiothyrapy, bonemarrow transplantation)
Our study was conducted of in the period of 6 months.
Tools of data collection
Data was collected through the following tools
Tool 1 A pre-designed questionnaire (Appendix II). This tool designed and developed by researcher and reviewed by the supervisors it was written in a simple Arabic language after reviewing the related scientific literature in the form of closed ended questions (multiple choices). It consisted of two parts as the following
Part Ӏ characteristics of the studied sample
- Characteristics of studied children as Age, gender, residence, educational level, ranking of the child in the family and child siblings numbers.
- Medical history of studied children as Diagnosis, duration of disease, date of relapse, metastatic, sites of metastatic, date of referral, duration of illness, hospitalization, causes of hospitalization, type of treatment, when referred to hospice care and psychological problem.
- Characteristics of studied caregivers as Age, gender, level of education, occupation, degree of relation, residence, attendance of previous traning course and psychological problem.
Part IӀ Assessment of studied caregivers’ knowledge about the following items
- Cancer Background (6 questions) including Definition, types, causes, signs and symptom, types of management and complication.
- Hospice care phase (4 questions) including Definition, causes of hospice care referral, component of hospice care and physical problems of pediatric cancer patient in hospice phase.
- Pain (13 questions) including Definition, types, degree, types of non-pharmacological pain management, types of analgesics, side effects of analgesics, narcotics, side effects of narcotics, precautions for using pain management and pain assessment.
Scoring system to assess the caregivers’ knowledge their answers (23 items) all items of the questionnaire.
Then checked with a model key answer. According to their responses, the right answer was scored by 1, and the wrong was scored 0.
These scores were summed-up and converted into a percent score 23 marks (100%) scores. Then, and accordingly the studied caregivers knowledge was categorized into two levels
- Score < 60% (less than 13 marks) referred to unsatisfactory knowledge.
- Score ≥ 60% (13 marks or more) referred to satisfactory knowledge.
Part III
Spiritual Well-Being Scales (SWB) It is originally adapted from Anu Behay (2002) to measure caregivers spiritual well - being. This scale consists of the 5 questions (Peaceful and faith feel anxious and fear, spiritual beliefs, coping with stress, physical ability) It is modified and translated by the researcher.
Scoring system
Responses were as (5) strongly agree, (4) agree, (3) sometimes, (2) disagree, and (1) strongly disagree. The maximum score was (25) and minimum (5). The score of items were summed-up and the total divided by number of the items, giving a mean score of the part. These scores were converted into a percent score was classified as the following
- High spiritual well-being ≥ 60% (15 marks or more).
- Low spiritual well-being < 60% (less than15 marks).
Part IV
Ryff’s Psychological Well-Being Scales PWB) It was originally adopted from Ryff’s, (1989), to measure caregivers’ psychological Well-being. This scale consists of the six questions (Autonomy “The patient participates in decision making”, Environmental mastery” Feel of frustration toward responsibilities of my daily life”, Purpose in life” live life one day at a time and don’t really think about the future”, Personal growth ” caregivers ability to bear difficult situation in hospice phase”, Positive relations “maintin relationship with all family” and Self-acceptance “feel of guilt towerd pediatric cancer patients”). It was modified and translated by the researchers.
Scoring system
Responses were as (5) strongly agree, (4) agree, (3) sometimes, (2) disagree, and (1) strongly disagree. The maximum score was (30) and minimum (6). The score of items were summed-up and the total divided by number of the items, giving a mean score of the part. These scores were converted into a percent score was classified as the following
Better psychological well-being > 60% (18 marks or more).
Bad psychological well-being < 60% (less than18 marks or more).
Tool 2 Observational Checklists (Appendix III)
This tool was designed to assess caregivers practice regarding care for pediatric cancer patients in hospice phase.
4- This tools adapted from Joint Commission International (JCI) Standard, 2017) the relevant reference to assess the actual caregivers practice regarding care of their children such as oxygen therapy care (19 steps), wound care (22 steps), urinary catheter care (19 steps), nasogastric feeding (17 steps), oral medication (12 steps), colostomy (22 steps), prevention, bed sore care (9 steps) and mouth care (8 steps). Each caregiver was observed during each procedure.
Scoring system
The total number of procedure were 128 steps, caregivers practices were checked during care for pediatric cancer patient, the applied step was scored (1) and the not applied was scored zero. The score of steps were summed-up and the total scores were converted into a percent score and were classified as the following
Less than 60% (less than 76 marks) was considered incompetent practices.
60% and more (76 marks or more) was considered competent practices.
Results
Finding of the current study can be summarized as the following
• Regarding the characterstics of the studied children, mean age of the studied children was 8.9±4.03 years. Whil nearly third of the studied children age ranging from 10- <15 years, more than half of the studied children were males and less than three quarters are living in rural areas. Nearly two fifths of them had nursery educational level while half of them ranked as the second child in family. More than one third of them had one sibling.
• Regarding, the medical history of the studied children, less than one third of the studied children had osteosarcoma. While the mean duration of the disease for studied children was 4.3 +1.9 years. Also more than half of them had the duration of disease relapse more than 1 year. Moreever nearly half of them were referred to hospice care less than 3 months ago. The majority of them had previous hospitalization more than one third of the studied children hospital visit due to pain. While the minority of them hospital visit due to blood transfusion.
• As regard the charactristcs of the studied caregivers, more than half of the studied caregivers age 35- < 45 years mean age 42.4 ± 7.2 years, while the majority of them were females. Also around half of them had middle education level, while nearly three fifths of them were housewives. The majority of the children accompanied with their mothers.
• Concecrning the studied caregivers knowledge regarding cancer, nearly three fifths of studied caregivers had satisfactory knowledge about definition of cancer, while about third of them had satisfactory knowledge about types of cancer, while the majority of them had satisfactory knowledge regarding causes, manifestation & types of cancer management
• As regard the knowledge of the studied caregivers regarding hospice care, more than third of the studied caregivers had satisfactory knowledge about definition of hospice care. While the majority of them had unsatisfactory knowledge about causes of referral to hospice care phase and only tenth of them had satisfactory knowledge regarding physical problems of child during hospice care.
• Concerning the studied caregiver regarding more than two fifths of them done practices of check physician orders and choose the most suitable size of oxygen mask according to the child’s age. While more than half of studied caregivers’ not done practices in general for most items and only less than one fifth of them done practices for terminate oxygen therapy gradually when indicated.
• Concerning the studied caregiver regarding colostomy care more than half of studied caregivers’ done practice about pre procedure regarding colostomy care. While more than three fifths of them not done practice in during procedure of colostomy care. But more than two fifths of them done practice after procedure.
• Concerning the relation betwwen knowledge, practice and chractristcs of caregivers, there was a significant relation between the level of knowledge of studied caregivers and their gender and educational level, also more than two fifths of males had satisfactory knowledge while only less than one fifth of females had satisfactory knowledge. Also more than half of them highly educated had satisfactory knowledge while only less than one fifth of middle education had satisfactory knowledge. While illiterate, read and write had all unsatisfactory knowledge.
• As regard the relation between socio-demographic data of studied caregivers and their level of practices there was a significant relation between the level of practices of caregivers and their education, while more than third of highly educated caregivers had competent practices while more than quarter of the middle education had competent practices and minority of where read and write had competent practices.
Hospice care for children and young people is an active and total approach to care, from the point of diagnosis, throughout the child’s life, death and beyond. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of quality of life for the child or young person and support for the whole family, includes the management of distressing symptoms, provision of short breaks, care at the end of life and bereavement (Bally et al., 2019).
Hospice care of a patient focus on caring not curing. Hospice is the model of compassionate care for people facing death, hospice care involves a team-oriented approach to expert medical care, pain management, emotional and spiritual support expressly tailored to the patient’s needs and wishes. In hospice and palliative care, care given to patient the right to die pain free and with dignity, caregivers will receive the necessary support to allow provides hospice care to pediatric cancer patients at end stage of life (National Hospice Palliative Care Organization [NHPCO], 2016).
In hospice tasks undertaken by family caregivers can be identified as either direct or indirect care. Direct care encompasses tasks that are carried out with the patient directly, while indirect care tasks are done on behalf of the patient by the family caregivers, such as paying bills. The role of the family caregivers changes as the condition and treatment strategies of the patient change (Mahmoud & Elaziz, 2015).
This study aimed to
The aim of the current study is to assess the caregivers knowledge and practices regarding hospice care.
This aim can be achieved through the following objective
- Assess the caregiver’s knowledge regarding hospice care phase
- Assess the caregiver’s practices regarding hospice care phase for their children with cancer
- Assess the relationship between knowledge and practices of caregiver’s regarding hospice care for their children with cancer?
Research Questions
1. What is the caregivers knowledge regarding hospice care phase?
2. What are the caregivers practices regarding hospice care phase for their children with cancer?
3. What is the relationship between knowledge and practices of caregivers regarding hospice care for their children with cancer?
IV- Technical Design
Study Design
A Descriptive design was utilized for conduction of the current study.
Setting
This study was conducted at the Children’ Cancer Hospital Egypt 57357(CCHE) widely known as Hospital 57357 is a unique healthcare institution; (CCHE 57357) is the largest Hospital in the Egypt in terms of capacity (320 beds). It was established in 2007 with the mission of providing the best comprehensive family centered quality care and a chance for cure to all children with cancer seeking its services, free of charge and without discrimination including chemotherapy, radiotherapy, surgery, bone marrow transplant, multi-disciplinary clinics, physical rehabilitation, socio-psychological care, palliative/Hospice care, survivorship care and in-house schooling.
Sampling
A Purposive sample of pediatric caregivers cancer patients at the previously mentioned setting (100 caregivers), in a duration of 6 months.
Inclusion criteria
Caregivers of children in hospice phase, or with relapsed solid cancer were included in this study.
Exclusion criteria
1. Caregivers of children without confirmed diagnosis.
2. Caregivers of children undergoing cancer treatment (chemothyrapy, radiothyrapy, bonemarrow transplantation)
Our study was conducted of in the period of 6 months.
Tools of data collection
Data was collected through the following tools
Tool 1 A pre-designed questionnaire (Appendix II). This tool designed and developed by researcher and reviewed by the supervisors it was written in a simple Arabic language after reviewing the related scientific literature in the form of closed ended questions (multiple choices). It consisted of two parts as the following
Part Ӏ characteristics of the studied sample
- Characteristics of studied children as Age, gender, residence, educational level, ranking of the child in the family and child siblings numbers.
- Medical history of studied children as Diagnosis, duration of disease, date of relapse, metastatic, sites of metastatic, date of referral, duration of illness, hospitalization, causes of hospitalization, type of treatment, when referred to hospice care and psychological problem.
- Characteristics of studied caregivers as Age, gender, level of education, occupation, degree of relation, residence, attendance of previous traning course and psychological problem.
Part IӀ Assessment of studied caregivers’ knowledge about the following items
- Cancer Background (6 questions) including Definition, types, causes, signs and symptom, types of management and complication.
- Hospice care phase (4 questions) including Definition, causes of hospice care referral, component of hospice care and physical problems of pediatric cancer patient in hospice phase.
- Pain (13 questions) including Definition, types, degree, types of non-pharmacological pain management, types of analgesics, side effects of analgesics, narcotics, side effects of narcotics, precautions for using pain management and pain assessment.
Scoring system to assess the caregivers’ knowledge their answers (23 items) all items of the questionnaire.
Then checked with a model key answer. According to their responses, the right answer was scored by 1, and the wrong was scored 0.
These scores were summed-up and converted into a percent score 23 marks (100%) scores. Then, and accordingly the studied caregivers knowledge was categorized into two levels
- Score < 60% (less than 13 marks) referred to unsatisfactory knowledge.
- Score ≥ 60% (13 marks or more) referred to satisfactory knowledge.
Part III
Spiritual Well-Being Scales (SWB) It is originally adapted from Anu Behay (2002) to measure caregivers spiritual well - being. This scale consists of the 5 questions (Peaceful and faith feel anxious and fear, spiritual beliefs, coping with stress, physical ability) It is modified and translated by the researcher.
Scoring system
Responses were as (5) strongly agree, (4) agree, (3) sometimes, (2) disagree, and (1) strongly disagree. The maximum score was (25) and minimum (5). The score of items were summed-up and the total divided by number of the items, giving a mean score of the part. These scores were converted into a percent score was classified as the following
- High spiritual well-being ≥ 60% (15 marks or more).
- Low spiritual well-being < 60% (less than15 marks).
Part IV
Ryff’s Psychological Well-Being Scales PWB) It was originally adopted from Ryff’s, (1989), to measure caregivers’ psychological Well-being. This scale consists of the six questions (Autonomy “The patient participates in decision making”, Environmental mastery” Feel of frustration toward responsibilities of my daily life”, Purpose in life” live life one day at a time and don’t really think about the future”, Personal growth ” caregivers ability to bear difficult situation in hospice phase”, Positive relations “maintin relationship with all family” and Self-acceptance “feel of guilt towerd pediatric cancer patients”). It was modified and translated by the researchers.
Scoring system
Responses were as (5) strongly agree, (4) agree, (3) sometimes, (2) disagree, and (1) strongly disagree. The maximum score was (30) and minimum (6). The score of items were summed-up and the total divided by number of the items, giving a mean score of the part. These scores were converted into a percent score was classified as the following
Better psychological well-being > 60% (18 marks or more).
Bad psychological well-being < 60% (less than18 marks or more).
Tool 2 Observational Checklists (Appendix III)
This tool was designed to assess caregivers practice regarding care for pediatric cancer patients in hospice phase.
4- This tools adapted from Joint Commission International (JCI) Standard, 2017) the relevant reference to assess the actual caregivers practice regarding care of their children such as oxygen therapy care (19 steps), wound care (22 steps), urinary catheter care (19 steps), nasogastric feeding (17 steps), oral medication (12 steps), colostomy (22 steps), prevention, bed sore care (9 steps) and mouth care (8 steps). Each caregiver was observed during each procedure.
Scoring system
The total number of procedure were 128 steps, caregivers practices were checked during care for pediatric cancer patient, the applied step was scored (1) and the not applied was scored zero. The score of steps were summed-up and the total scores were converted into a percent score and were classified as the following
Less than 60% (less than 76 marks) was considered incompetent practices.
60% and more (76 marks or more) was considered competent practices.
Results
Finding of the current study can be summarized as the following
• Regarding the characterstics of the studied children, mean age of the studied children was 8.9±4.03 years. Whil nearly third of the studied children age ranging from 10- <15 years, more than half of the studied children were males and less than three quarters are living in rural areas. Nearly two fifths of them had nursery educational level while half of them ranked as the second child in family. More than one third of them had one sibling.
• Regarding, the medical history of the studied children, less than one third of the studied children had osteosarcoma. While the mean duration of the disease for studied children was 4.3 +1.9 years. Also more than half of them had the duration of disease relapse more than 1 year. Moreever nearly half of them were referred to hospice care less than 3 months ago. The majority of them had previous hospitalization more than one third of the studied children hospital visit due to pain. While the minority of them hospital visit due to blood transfusion.
• As regard the charactristcs of the studied caregivers, more than half of the studied caregivers age 35- < 45 years mean age 42.4 ± 7.2 years, while the majority of them were females. Also around half of them had middle education level, while nearly three fifths of them were housewives. The majority of the children accompanied with their mothers.
• Concecrning the studied caregivers knowledge regarding cancer, nearly three fifths of studied caregivers had satisfactory knowledge about definition of cancer, while about third of them had satisfactory knowledge about types of cancer, while the majority of them had satisfactory knowledge regarding causes, manifestation & types of cancer management
• As regard the knowledge of the studied caregivers regarding hospice care, more than third of the studied caregivers had satisfactory knowledge about definition of hospice care. While the majority of them had unsatisfactory knowledge about causes of referral to hospice care phase and only tenth of them had satisfactory knowledge regarding physical problems of child during hospice care.
• Concerning the studied caregiver regarding more than two fifths of them done practices of check physician orders and choose the most suitable size of oxygen mask according to the child’s age. While more than half of studied caregivers’ not done practices in general for most items and only less than one fifth of them done practices for terminate oxygen therapy gradually when indicated.
• Concerning the studied caregiver regarding colostomy care more than half of studied caregivers’ done practice about pre procedure regarding colostomy care. While more than three fifths of them not done practice in during procedure of colostomy care. But more than two fifths of them done practice after procedure.
• Concerning the relation betwwen knowledge, practice and chractristcs of caregivers, there was a significant relation between the level of knowledge of studied caregivers and their gender and educational level, also more than two fifths of males had satisfactory knowledge while only less than one fifth of females had satisfactory knowledge. Also more than half of them highly educated had satisfactory knowledge while only less than one fifth of middle education had satisfactory knowledge. While illiterate, read and write had all unsatisfactory knowledge.
• As regard the relation between socio-demographic data of studied caregivers and their level of practices there was a significant relation between the level of practices of caregivers and their education, while more than third of highly educated caregivers had competent practices while more than quarter of the middle education had competent practices and minority of where read and write had competent practices.