Background:Parents of children with complex right ventricular outflow tract(RVOT)anomalies are confronted with their child’s need for heart surgery early in life and repeated reoperations later on.Preoperative assess...Background:Parents of children with complex right ventricular outflow tract(RVOT)anomalies are confronted with their child’s need for heart surgery early in life and repeated reoperations later on.Preoperative assessment needs to be performed whenever an indication for reoperation is suspected.The aim was to illuminate the experiences of parents of children diagnosed with RVOT anomalies,in particular,how they experience their child’s heart disease and everyday life during the assessment and after the decision on whether to perform a reoperation.Method:Individual interviews(n=27)were conducted with nine parents on three occasions between 2014 and 2016 and analyzed using reflexive thematic analysis.Results:The analysis resulted in the following five main coexisting themes:The heart surgery keeps my child alive illuminates parents’experiences during and after the assessment and emphasizes that heart surgery,although dreaded,is central for their child’s survival;Everyday struggles illuminates the different struggles parents had to face to ensure that their child would be in the best possible condition;the remaining three themes,Unconditional love,Trust in life,and Togetherness,illuminate the ways in which the parents gained inner strength and confidence in their everyday lives.Conclusion:Although the parents were grateful for the assessment and had learned to navigate among the fears it aroused,they experienced several distressing situations during the assessment process that should be addressed.By inviting both the parents and their child to participate in the child’s care,individualized support can take into account the needs of both parents and child.展开更多
BACKGROUND Parents of children with type 1 diabetes mellitus(T1DM)are under heavy caregiving stress,and parental caregivers'experience can affect the health outcomes of children with T1DM.AIM To describe the true ...BACKGROUND Parents of children with type 1 diabetes mellitus(T1DM)are under heavy caregiving stress,and parental caregivers'experience can affect the health outcomes of children with T1DM.AIM To describe the true inner feelings of parents caring for children with T1DM.METHODS Descriptive research methods were used to classify and summarize parents'experience when adapting to the role of caregivers for children with T1DM.The data was sorted and analyzed using content analysis.Themes of parents'experience caring for children with T1DM were refined,and their feelings were deeply investigated.RESULTS A total of 4 themes and 12 subthemes were identified:(1)Desire for information(disease-related information,home care information,and channels of information acquisition);(2)Skill guidance needs(insulin injection techniques,skills required for symptom management,and skills for parent-child communication);(3)Seeking emotional support(family support,peer support from other parents of children with T1DM,and professional support);and(4)Lack of social support(needs for financial support and needs for social security).Exploring the true experience of parents caring for children with T1DM is of great significance for helping them adapt to their role as caregivers.Nurses should provide professional guidance in terms of information,skills,emotion,and social support to parental caregivers.展开更多
Whenever a child suffers, what does she or he cry? Mother! What does that mean? Palliative care is not a type of medicine based on objective evidence or statistics. The only relevant standard is the very individual qu...Whenever a child suffers, what does she or he cry? Mother! What does that mean? Palliative care is not a type of medicine based on objective evidence or statistics. The only relevant standard is the very individual quality of life. Nobody knows better what this actually means but the patient himself. Thus, if the mother's presence has the biggest impact on a child's wellbeing or comfort, she herself is the most valuable treatment modality. In nearly every publication dealing with pediatric palliative care, it is stated that palliative care does not only imply care for the sick child but also for the parents and the whole family. Usually, it is pointed out that they are suffering a lot as well. But helping them does also mean: helping the child! Of course, it means higher efforts, obligations and costs for the healthcare system. Thus the justification of this effort may be put in question; in particular, it may be argued that disorders of family members should, if necessary, be treated as such. But this is only one side of the coin! In the following, we will, based on published literature, look at the role of mothers, fathers, and siblings for the wellbeing of an ill or even dying child. As a conclusion, we will learn that if it is our task to give a dying child the best available care, helping mothers, fathers and sibling is an inevitable part of it.展开更多
基金This study was supported by the Pediatric Heart Center at Skåne University Hospital Lund and Lund University,and by the Swedish Children’s Heart Association.
文摘Background:Parents of children with complex right ventricular outflow tract(RVOT)anomalies are confronted with their child’s need for heart surgery early in life and repeated reoperations later on.Preoperative assessment needs to be performed whenever an indication for reoperation is suspected.The aim was to illuminate the experiences of parents of children diagnosed with RVOT anomalies,in particular,how they experience their child’s heart disease and everyday life during the assessment and after the decision on whether to perform a reoperation.Method:Individual interviews(n=27)were conducted with nine parents on three occasions between 2014 and 2016 and analyzed using reflexive thematic analysis.Results:The analysis resulted in the following five main coexisting themes:The heart surgery keeps my child alive illuminates parents’experiences during and after the assessment and emphasizes that heart surgery,although dreaded,is central for their child’s survival;Everyday struggles illuminates the different struggles parents had to face to ensure that their child would be in the best possible condition;the remaining three themes,Unconditional love,Trust in life,and Togetherness,illuminate the ways in which the parents gained inner strength and confidence in their everyday lives.Conclusion:Although the parents were grateful for the assessment and had learned to navigate among the fears it aroused,they experienced several distressing situations during the assessment process that should be addressed.By inviting both the parents and their child to participate in the child’s care,individualized support can take into account the needs of both parents and child.
文摘BACKGROUND Parents of children with type 1 diabetes mellitus(T1DM)are under heavy caregiving stress,and parental caregivers'experience can affect the health outcomes of children with T1DM.AIM To describe the true inner feelings of parents caring for children with T1DM.METHODS Descriptive research methods were used to classify and summarize parents'experience when adapting to the role of caregivers for children with T1DM.The data was sorted and analyzed using content analysis.Themes of parents'experience caring for children with T1DM were refined,and their feelings were deeply investigated.RESULTS A total of 4 themes and 12 subthemes were identified:(1)Desire for information(disease-related information,home care information,and channels of information acquisition);(2)Skill guidance needs(insulin injection techniques,skills required for symptom management,and skills for parent-child communication);(3)Seeking emotional support(family support,peer support from other parents of children with T1DM,and professional support);and(4)Lack of social support(needs for financial support and needs for social security).Exploring the true experience of parents caring for children with T1DM is of great significance for helping them adapt to their role as caregivers.Nurses should provide professional guidance in terms of information,skills,emotion,and social support to parental caregivers.
文摘Whenever a child suffers, what does she or he cry? Mother! What does that mean? Palliative care is not a type of medicine based on objective evidence or statistics. The only relevant standard is the very individual quality of life. Nobody knows better what this actually means but the patient himself. Thus, if the mother's presence has the biggest impact on a child's wellbeing or comfort, she herself is the most valuable treatment modality. In nearly every publication dealing with pediatric palliative care, it is stated that palliative care does not only imply care for the sick child but also for the parents and the whole family. Usually, it is pointed out that they are suffering a lot as well. But helping them does also mean: helping the child! Of course, it means higher efforts, obligations and costs for the healthcare system. Thus the justification of this effort may be put in question; in particular, it may be argued that disorders of family members should, if necessary, be treated as such. But this is only one side of the coin! In the following, we will, based on published literature, look at the role of mothers, fathers, and siblings for the wellbeing of an ill or even dying child. As a conclusion, we will learn that if it is our task to give a dying child the best available care, helping mothers, fathers and sibling is an inevitable part of it.
