The experiences of parents of children in pediatric palliative care: A qualitative study

Karakul, Atiye; KIRATLI, Didem; Akgül, Esra Ardahan; Çelik, Tanju

doi:10.1016/j.pedn.2022.08.015

Cited by 7 publications

(7 citation statements)

References 26 publications

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“…Other demographics did not show any significant association with parents' perception of their children's quality of life. Table (5) demonstrates that there was a positive correlation (p value = < 0.001) between total family management and total quality of life level.…”

Section: Discussionmentioning

confidence: 93%

Family Management and Its Relation to Health-related Quality of Life among Thalassemic Children

Adly,

Mohamed,

Abuelela

et al. 2023

Minia Scientific Nursing Journal

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Background: Children with thalassemia are more exposed to physical, psychological, environmental and social problems and the families have a crucial role in caring for thalassemic children. Aim: To assess family management and its relation to health-related quality of life among thalassemic children. Research design: A descriptive research design was used to fulfill the aim of the study. Sample: A purposive sample included 103 of families with thalassemic children. Data Collection Tools: Tool (I): A structured interviewing questionnaire includes two parts. Part 1: Demographic characteristics: A: Background information of parent. B: Background information of the child. Part 2:Family Management Measure (FaMM). Setting: This study was performed at a hematology clinic in the Minia Regional Blood Bank.Tool (II): Pediatric Quality of Life Inventory Version 4.0™ parent proxy-report (PedsQL™ 4.0). Results: 62.2% of the studied families have a poor level of family management measures toward thalassemic children with Mean of 74.44±12.70 and also 60.2% of the studied families reported that have a poor quality of life for their children with mean of 65.1±10.20. Conclusion: a positive correlation was found between the total family management and the total level quality of life, some sociodemographic characteristic such as residence, education, income and number of family members were associated with family management measures and also with the parents' perception of their children's quality of life among families of thalassemic children. Recommendations: health education programs should be given about family management and its relation to health-related quality of life among thalassemic children. Community health nurses should collaborate with other health team members to implement comprehensive educational sessions about endogamy mirage and its significant relation to thalassemic disease.

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Section: Discussionmentioning

confidence: 93%

Family Management and Its Relation to Health-related Quality of Life among Thalassemic Children

Adly,

Mohamed,

Abuelela

et al. 2023

Minia Scientific Nursing Journal

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“…Similarly, previous studies demonstrated that the care burden of mothers was quite high. [25][26][27][28] It has been stated that it is not easy for parents to transfer their responsibilities to someone else. 27 Home care teams and social support systems should be well coordinated in order to support the family and the home care needs of children who are dependent on medical technology.…”

Section: Discussionmentioning

confidence: 99%

“…[25][26][27][28] It has been stated that it is not easy for parents to transfer their responsibilities to someone else. 27 Home care teams and social support systems should be well coordinated in order to support the family and the home care needs of children who are dependent on medical technology. When home care services and social support systems are insufficient, families continue their lives with individual solutions.…”

Section: Discussionmentioning

confidence: 99%

Determining the Difficulties of Parents with Children in Home Care Who Were Discharged from Intensive Care

Bozkurt,

Sönmez Düzkaya,

Uysal

et al. 2024

cayd

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“…The caregivers feel the burden owing to the long-standing character of the diseases and the struggling process for curing patients, and the caregivers have to face numerous burdens that lead them towards anxiety, depression, social withdrawal, aggression, poor relationships, lower productivity, and many others. A disease like thalassemia has many complications that may lead to physical, cognitive, social, and monetary burdens that negatively affect the patients, their families, and especially the caregivers (Atiye et al, 2022).…”

Section: Introductionmentioning

confidence: 99%

Perceived Physical, Emotional and Monetary Burden among Caregivers of Thalassemia Patients: An Evidence-based Study from District Gujrat, Pakistan

Sikandar,

Afzal,

Khalid

et al. 2024

QJSS

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Thalassemia is among the most challenging hereditary blood disorders with no permanent cure. The patients of thalassemia have to face multidimensional complications that may lead to physical, emotional, social, and monetary burdens, among others, that negatively affect the patients, their families, and especially the caregivers. The caregivers feel the burden owing to the long-standing character of the diseases and the struggling process for curing patients, and the caregivers have to face numerous burdens that lead them towards anxiety, depression, social withdrawal, aggression, poor relationships, lower productivity, and many others. The prime objective of this study is to understand the physical, emotional, and monetary burdens faced by caregivers, and primary data for this quantitative study were collected from caregivers of thalassemia patients of district Gujrat. Researchers applied the purposive sampling technique and a structured questionnaire to approach the study participants. The findings highlighted that the caregivers of thalassemia patients face a large number of physical (continued attachment, tiredness, isolation, lower productivity), emotional (aggression, depression, fear of losing a loved one life), and monetary (visiting health centers, arranging blood donors, travel and transportation, personal obligations) burdens that have significant impacts on their socio-economic, psychological and physical health.

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The experiences of parents of children in pediatric palliative care: A qualitative study

Cited by 7 publications

References 26 publications

Family Management and Its Relation to Health-related Quality of Life among Thalassemic Children

Family Management and Its Relation to Health-related Quality of Life among Thalassemic Children

Determining the Difficulties of Parents with Children in Home Care Who Were Discharged from Intensive Care

Perceived Physical, Emotional and Monetary Burden among Caregivers of Thalassemia Patients: An Evidence-based Study from District Gujrat, Pakistan

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