Parent’s experiences of their child’s withdrawal syndrome: a driver for reciprocal nurse-parent partnership in withdrawal assessment (original) (raw)
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Nursing judgement and decision-making using the Sedation Withdrawal Score (SWS) in children
Journal of Advanced Nursing, 2017
The aim of the study was to evaluate registered children's nurses' approaches to the assessment and management of withdrawal syndrome in children. Background Assessment of withdrawal syndrome is undertaken following critical illness when the child's condition may be unstable with competing differential diagnoses. Assessment tools aim to standardise and improve recognition of withdrawal syndrome. Making the right decisions in complex clinical situations requires a degree of mental effort and it is not known how nurses make decisions when undertaking withdrawal assessments. Design Cognitive interviews with clinical vignettes. Methods Interviews were undertaken with 12 nurses to explore the cognitive processes they utilised when assessing children using the Sedation Withdrawal Score (SWS) tool. Interviews took place in Autumn 2013. Findings Each stage of decision-making-noticing, interpreting and responding-presented cognitive challenges for nurses. When defining withdrawal behaviours nurses tended to blur the boundaries between SWS signs. Challenges in interpreting behaviours arose from not knowing if the patient's behaviour was a result of withdrawal or other co-morbidities.
Pediatric Critical Care Medicine, 2013
Objective: The Sophia Observation withdrawal Symptoms scale is an instrument for screening benzodiazepine and opioid withdrawal syndrome in pediatric critical care patients. The objectives of this study were to establish cutoff scores and to test sensitivity to change. Second, risk factors for withdrawal syndrome were explored. Design: Prospective observational study with repeated measures. Setting: Level IV ICU at a university children's hospital. Patients: A total of 154 children with median age 5 months (interquartile range, 0-42 mo) who received continuous infusion of benzodiazepines and/or opioids for 5 or more days. Interventions: None. Measurements and Main Results: Nurses repeatedly applied the Sophia Observation withdrawal Symptoms scale and the Numeric Rating Scale withdrawal when children were weaned off benzodiazepines and opioids. The latter represents the nurse's expert opinion. We analyzed 3,754 paired assessments; the median number per child was 15 (interquartile range, 7-31) over a median of 5 days (interquartile range, 3-11 d). Sensitivity and specificity were 0.83 and 0.93, respectively, for the Sophia Observation withdrawal Symptoms scale cutoff score of 4 or higher against a Numeric Rating Scale-withdrawal score of 4 or higher. Sensitivity to change was determined by comparing 156 Sophia Observation withdrawal Symptoms scale assessments (n = 51 patients) before and after additional sedatives or opioids. Multilevel regression analysis showed a mean decline of 1.5 points (at score range 0-15) after intervention (p < 0.0001). Logistic regression analysis identified duration of preweaning of midazolam, duration of weaning of midazolam, duration of preweaning of morphine, duration of weaning of morphine, and number of additional sedatives/opioids as statistically significant risk factors for withdrawal syndrome in these children.
Follow up care of bereaved parents after treatment withdrawal from newborns
Archives of Disease in Childhood - Fetal and Neonatal Edition, 2001
Objective-To explore parents' experiences of bereavement care after withdrawal of newborn intensive care. Design-Face to face interviews with 108 parents of 62 babies born over two calendar years in the East of Scotland. Results-Only 22% were seen by six weeks after the death, 10% were not recalled before 6-11 months, and 8% were not seen at all in the first year. All except one couple saw the neonatologist who had cared for their baby. Only 33% remembered a neonatal nurse being present. Most (88%) were seen in the study hospital. Parents highlighted a number of specific needs. Appointments should be: (a) scheduled soon after the death of the baby and certainly within two months of the death irrespective of whether or not autopsy results are available; (b) with the named neonatologist; (c) in a setting away from the hospital if possible. Parents value: (a) eVorts to find out how they are coping; (b) full frank information given sensitively to enable them to build up a cohesive picture of what happened and assess their future risks; (c) reassurance where possible, but half truths, false reassurances, and broken promises are unacceptable. Conclusions-Follow up care is a crucial part of the management of families from whose babies treatment has been withdrawn. Resources devoted to it should be reexamined to provide a service more in tune with parental need. In choosing the place, timing, and conduct of the meeting, staV should be sensitive to the expressed wishes of the parents themselves.
Intensive and Critical Care Nursing, 2009
In this study, parents were asked which aspects of their experience of having a child in intensive care had caused them the most distress and how they continued to be affected by these experiences. Research methodology: Semi-structured interviews held with 32 mothers and 18 fathers of children admitted to a paediatric intensive care unit 8 months earlier, were audiotaped, transcribed and subjected to a thematic analysis. Setting: The setting was an eight-bed paediatric intensive care unit in an inner city teaching hospital. Results: Significant themes included the vividness of parents' memories of admission; the intensity of distress associated with times of transition and the lasting impact of their experience, in terms both of the ongoing need to protect their child and in relation to their priorities in life. Fathers reported different coping strategies, spent less time on the unit and were less likely than mothers to report fearing that their child would die. Conclusions: Parents report significant and persisting distress. Further research is needed on how best to support them acutely and in the longer term.
Parents’ experiences of participation in the care of hospitalised children: A qualitative study
International Journal of Nursing Studies, 2006
Background: The introduction of unrestricted visiting hours has led to the encouragement of parents to stay with and participate in the care of their hospitalised child. In order to stay with the hospitalised child, parents have to be away from home or work, which in turn impacts on their personal and family life. However, no published study on parents' experiences of childcare participation during paediatric hospitalisation has been found for a Chinese population. Objectives: This study explored Chinese parents' experiences of their participation in taking care of their hospitalised child. Design: A qualitative exploratory design was adopted to capture parents' experiences of participation. Settings: The study was conducted in four paediatric wards of a regional acute general hospital in the New Territories, a major geographical region of Hong Kong. Participants: Nineteen parents (16 mothers and three fathers) who had a child hospitalised for more than 48 h and identified themselves as staying comparatively longer with the child than their counterpart were recruited. Methods: Data were collection by tape-recorded semi-structured interview. Results: Four major categories that illustrated parents' experiences of participation in childcare were identified: reasons for staying with the child, rescheduling of family's routine, expectations of nurses, and comments on facility provisions. The findings highlight parents' desire for participation in caring for their hospitalised child, their unexpressed needs for communication and concern about the non-monetary costs of participation. Conclusions: Most parents viewed accompanying their hospitalised child as an unconditional aspect of being a parent and had a strong desire for participation. Parents' need for communication and emotional support during their participation of childcare in paediatric unit are universal. As Chinese parents are passive in seeking help, nurses should take the initiative in assessing their needs and offering them support accordingly. r
PEDIATRICS, 2009
OBJECTIVES. The objective of this study was to develop and pretest a questionnaire to assess the practice of withdrawal of life-sustaining treatment in the NICU on the basis of the experiences of bereaved parents. METHODS. We conducted semistructured interviews with 11 parents whose infants had undergone withdrawal of life-sustaining treatment in the NICU at McMaster University Medical Centre to obtain their views on helpful practices. Interviews continued until no new items were obtained (ie, saturation point). A total of 370 items were distilled into 82 questionnaire statements on care by a multidisciplinary team and grouped for analysis into 6 domains: communication, quality of care, quality of life, shared decision-making, withdrawal of life-sustaining treatment process, and bereavement care. Respondents were asked to rank how frequently events occurred on a 7-point Likert scale anchored from 1 = never to 7 = always. A score of >5 was considered favorable. The questionnaire w...
The needs of parents of hospitalized children in Australia
Journal of Child Health Care, 2008
The aim of this study was to compare the perceptions of needs held by parents of hospitalized children with those held by the staff caring for them. Family-centred care is a central tenet of paediatrics and should encompass all aspects of the child and family's experience of hospitalization. Important to this are the needs of parents when their children are hospitalized. A widely used and validated tool was used with a convenience sample in paediatric facilities in a children's hospital in Australia. Some differences were found between parents and staff for scores for perceived importance of the 51 needs included in the questionnaire, and whether or not they were being met satisfactorily during children's hospital admission, although there were no consistent patterns. Parents declared themselves more independent than the staff perceived them to be. These findings facilitate improvements in communication between parents and staff and can be included in education programmes for both.