AIM: To document the concerns and expectations of parents of children with inflammatory bowel disease (IBD)within the context of a multidisciplinary IBD clinic, and to highlight the importance of a holistic approach t...AIM: To document the concerns and expectations of parents of children with inflammatory bowel disease (IBD)within the context of a multidisciplinary IBD clinic, and to highlight the importance of a holistic approach to the care of these children.METHODS: The parents of 60 children with IBD were surveyed by mailed questionnaire. Parents were asked to provide details of their concerns regarding their child's condition and to express their expectations of medical care. In addition, enquiry was made in respect to the respondents' learning about IBD.RESULTS: Forty-six questionnaires (77%) returned. Fiftytwo percent of the patients were male. Patients were aged a mean of 10.9 (±4.1) years and diagnosed at an average age of 2.1 (±1.8) years previously. The most common concerns expressed by the parents related to the side- effects of medications and the future prospects for their child. Overall, parents were satisfied with aspects of care within the IBD clinic but many suggested additional personnel such as counselors or educators should be available. Parents also reported the need for continuing education and easy access to up-to-date information.CONCLUSION: Parents of children and adolescents with IBD have many common concerns regarding their child's condition. On-going attention to holistic care, including psychosocial and educational elements for patients and families, is appropriate in the context of the chronic and unpredictable nature of IBD.展开更多
Objectives:The purpose of this study was to describe relationships between negative emotions and perceived emotional support in parents of children admitted to the pediatric intensive care unit(PICU).Methods:This cros...Objectives:The purpose of this study was to describe relationships between negative emotions and perceived emotional support in parents of children admitted to the pediatric intensive care unit(PICU).Methods:This cross-sectional descriptive study conducted face-to-face interviews between January 2019 and January 2020.Study variables included depression(PHQ-9 Scale),anxiety(Emotional Distress-Anxiety-Short Form 8a),anger(Emotional Distress-Anger-Short Form 5a),fear(Fear-Affect Computerized Adaptive Test),somatic fear(Fear-Somatic Arousal-Fixed Form),loneliness(Revised 20-item UCLA Loneliness Scale),and perceived emotional support(Emotional Support-Fixed Form).Results:Eighty parents reported symptoms of depression 8.00(4.00,13.75),anxiety(23.43±7.80),anger(13.40±5.46),fear(72.81±27.26),somatic fear 9.00(6.00,12.75),loneliness(39.35±12.00),and low perceived emotional support(32.14±8.06).Parents who were young,single,low-income,and with limited-post secondary education reported greater loneliness and lower perceived emotional support.Fear correlated with depression(r=0.737,P<0.01)and anxiety(r=0.900,P<0.01).Inverse relationships were discovered between perceived emotional support and loneliness(r=-0.767,P<0.01),anger(r=-0.401,P<0.01),and depression(r=-0.334,P<0.01).Conclusions:The cluster of negative emotions identified will serve as potential targets for future interventions designed to enhance support for parents of critically ill children.展开更多
文摘AIM: To document the concerns and expectations of parents of children with inflammatory bowel disease (IBD)within the context of a multidisciplinary IBD clinic, and to highlight the importance of a holistic approach to the care of these children.METHODS: The parents of 60 children with IBD were surveyed by mailed questionnaire. Parents were asked to provide details of their concerns regarding their child's condition and to express their expectations of medical care. In addition, enquiry was made in respect to the respondents' learning about IBD.RESULTS: Forty-six questionnaires (77%) returned. Fiftytwo percent of the patients were male. Patients were aged a mean of 10.9 (±4.1) years and diagnosed at an average age of 2.1 (±1.8) years previously. The most common concerns expressed by the parents related to the side- effects of medications and the future prospects for their child. Overall, parents were satisfied with aspects of care within the IBD clinic but many suggested additional personnel such as counselors or educators should be available. Parents also reported the need for continuing education and easy access to up-to-date information.CONCLUSION: Parents of children and adolescents with IBD have many common concerns regarding their child's condition. On-going attention to holistic care, including psychosocial and educational elements for patients and families, is appropriate in the context of the chronic and unpredictable nature of IBD.
基金This work was supported by the West Virginia University School of Nursing Research Investment Fund.
文摘Objectives:The purpose of this study was to describe relationships between negative emotions and perceived emotional support in parents of children admitted to the pediatric intensive care unit(PICU).Methods:This cross-sectional descriptive study conducted face-to-face interviews between January 2019 and January 2020.Study variables included depression(PHQ-9 Scale),anxiety(Emotional Distress-Anxiety-Short Form 8a),anger(Emotional Distress-Anger-Short Form 5a),fear(Fear-Affect Computerized Adaptive Test),somatic fear(Fear-Somatic Arousal-Fixed Form),loneliness(Revised 20-item UCLA Loneliness Scale),and perceived emotional support(Emotional Support-Fixed Form).Results:Eighty parents reported symptoms of depression 8.00(4.00,13.75),anxiety(23.43±7.80),anger(13.40±5.46),fear(72.81±27.26),somatic fear 9.00(6.00,12.75),loneliness(39.35±12.00),and low perceived emotional support(32.14±8.06).Parents who were young,single,low-income,and with limited-post secondary education reported greater loneliness and lower perceived emotional support.Fear correlated with depression(r=0.737,P<0.01)and anxiety(r=0.900,P<0.01).Inverse relationships were discovered between perceived emotional support and loneliness(r=-0.767,P<0.01),anger(r=-0.401,P<0.01),and depression(r=-0.334,P<0.01).Conclusions:The cluster of negative emotions identified will serve as potential targets for future interventions designed to enhance support for parents of critically ill children.
