Parents’ experiences during and after their child’s stay in the paediatric intensive care unit – A qualitative interview study
Child; Follow-up; Interview; Paediatric intensive care unit (PICU); Parents; Qualitative
Background Having a child admitted to the paediatric intensive care unit (PICU) is often an emotional and stressful experience for parents. Aim The aim of the study was to explore parents’ experiences during and after their child’s hospitalization in the PICU and to investigate whether parents have a need for post-PICU follow-up. Material and methods The research design was a qualitative study inspired by Ricoeur’s phenomenological-hermeneutic approach. The context of the study was a six-bed PICU in a university hospital in Denmark. In 2017, semi-structured interviews were conducted with four couples and three mothers six to 14 weeks after their child had been discharged from the PICU. The data were analysed and interpreted through Ricoeur’s three analytical levels and presented in themes and subthemes. Findings Three themes were identified in the analytical process: “The challenging PICU stay”, “The value of a network” and “The uncertain post-PICU trajectory”. Conclusion Information, dialogue and interaction with familiar health professionals, the diary written by PICU nurses, the parents’ personal network and social media supported the parents during and after the PICU stay. The parents expressed that post-PICU follow-up was not the most essential but that follow-up initiatives may be arranged individually.
Jakobsen L; Kristensen KK; Laerkner E
Intensive and Critical Care Nursing
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.iccn.2021.103089" target="_blank" rel="noreferrer noopener">10.1016/j.iccn.2021.103089</a>
Shifting and intersecting needs: Parents' experiences during and following the withdrawal of life sustaining treatments in the paediatric intensive care unit
Bereavement; End-of-life care; Family-centred care; Grief; Long-term outcomes; Qualitative
OBJECTIVES: To examine parents' perceptions of nursing care needs; including specific concerns, preferences and supportive actions for themselves and their dying child during and following the withdrawal of life support in the paediatric intensive care unit. RESEARCH DESIGN: Qualitative description with content analysis. SETTING: Interviews with eight parents of eight children who died in the paediatric intensive care unit 7-11 years prior. MAIN OUTCOME MEASURES: Descriptive categories of parents' perceptions of end-of-life needs. FINDINGS: Parents identified four shifting and intersecting categories of needs: To be together, To make sense of the child's evolving clinical care, To manage institutional, situational, and structural factors, and To navigate an array of emotions in a sterile context. Being closely connected with the child was highly important, but often intersected with other domains, requiring nurses' support. Parents' memories demonstrated persistent uncertainty about their child's end-of-life care that influenced their long-term grief. CONCLUSIONS: Intersections between parent-identified care needs suggest potential mechanisms to strengthen nurses' care for dying children. Equipped with the knowledge that the parent-child bond often shapes parents' priorities; nurses should aim to facilitate connections amidst paediatric intensive care unit processes. Ongoing uncertainty in parents' adaptation to loss suggests that attention to instances when needs intersect can have a lasting impact on parents' grief.
Broden EG; Werner-Lin A; Curley MAQ; Hinds Rnps
Intensive and Critical Care Nursing
2022
<a href="http://doi.org/10.1016/j.iccn.2022.103216" target="_blank" rel="noreferrer noopener">10.1016/j.iccn.2022.103216</a>
A prospective study of adverse reactions to the weaning of opioids and benzodiazepines among critically ill children
Analgesics; Nursing; PedPal Lit; Nonparametric; methods; Opioid/administration & dosage/adverse effects; 13-20% for 4-7 days; 8-13% for 8-14 days; 8% for 15-21 days; Adolescent Age Factors; and 2-4% for more t han 21 days of infusions. The authors recommend that the rate of weaning of opioids and benzodiazepines in critically ill children be tailored to the length of time the child received continuous infusions of these agents.; Benzodiazepines/administration & dosage/adverse effects Child Child; Health Care Statistics; Intravenous Intensive Care Units; methods/standards Critical Illness/therapy Drug Administration Schedule Drug Monitoring/; Newborn Infusions; Pediatric Nursing Assessment Nursing Evaluation Research Pediatric Nursing; Preschool Conscious Sedation/adverse effects/methods/nursing Critical Care/; standards Humans Infant Infant; standards Prospective Studies Quality Assurance; Substance Withdrawal Syndrome/diagnosis/etiology/prevention & control Time Factors
2005
Ducharme C; Carnevale FA; Clermont MS; Shea S
Intensive and Critical Care Nursing
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.iccn.2004.09.003" target="_blank" rel="noreferrer">10.1016/j.iccn.2004.09.003</a>
Mothers' recollections of the Paediatric Intensive Care Unit: associations with psychopathology and views on follow up
Child; Cross-Sectional Studies; Female; Humans; Male; Intensive Care Units; Adult; Attitude to Health; Questionnaires; Professional-Family Relations; Health Services Needs and Demand; Communication; Severity of Illness Index; Risk Factors; Nursing Methodology Research; Preschool; infant; Mothers/psychology; retrospective studies; ICU Decision Making; social support; Psychiatric Status Rating Scales; Stress Disorders; Acute/diagnosis/prevention & control/psychology; Aftercare/organization & administration/psychology; Hospitalized; Mass Screening; Pediatric/organization & administration; Traumatic
The aim of this study was to establish rates of posttraumatic stress symptoms in mothers after a child's admission to a Paediatric Intensive Care Unit (PICU) and their views on the potential value of a follow up appointment with PICU staff. Thirty-four mothers completed the Parental Stressor Scale:PICU, the General Health Questionnaire (GHQ-28) and the Impact of Event Scale, 8 months after discharge. In total 18/34 (53%) scored > or =5 on the GHQ-28 and 6/32 (18%) of the sample scored in the severe range (>35) on the Impact of Event Scale. Distress was associated with retrospective reports of stress experienced during admission (p < 0.001) but not with other demographic or medical variables. Mothers who talked about their feelings at the time of the admission had lower posttraumatic stress scores at 8 months (p = 0.02) and 25/34 (74%) mothers would have appreciated the offer of a follow up appointment. Screening for distress during admission with the Parental Stressor Scale:PICU may identify those mothers in greatest need of psychological support. Mothers' recollections of the Paediatric Intensive Care Unit: Associations with psychopathology and views on follow up.
2006
Colville GA; Gracey D
Intensive and Critical Care Nursing
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.iccn.2005.04.002" target="_blank" rel="noreferrer">10.1016/j.iccn.2005.04.002</a>
Reducing family members' anxiety and uncertainty in illness around transfer from intensive care: an intervention study
Female; Humans; Male; Intensive Care Units; Adult; Aged; Middle Aged; Australia; Analysis of Variance; adolescent; 80 and over; Family/psychology; ICU Decision Making; social support; Intervention; Interventions; Patient Transfer; Anxiety/prevention & control; Pamphlets
INTRODUCTION: This intervention study examines anxiety and uncertainty in illness in families transferring from intensive care to a general ward. METHODS: The pre-test, post-test design purposively allocated family members to a control (n = 80) and intervention group (n = 82). The intervention group experienced a structured individualised transfer method whereas the control group received existing ad hoc transfer methods. Families were surveyed before and after transfer. RESULTS: Families' uncertainty was significantly related to their state anxiety (P < 0.000), the relationship to the patient (P = 0.022), and the unexpected nature of patients' admission (P < 0.000). Anxiety increased significantly with reduced social support (P = 0.002). Following transfer, anxiety reduced significantly for both groups whereas uncertainty reduced significantly for the intervention group (P = 0.03). CONCLUSION: Families at the time of transfer experience uncertainty and anxiety, which are significantly related in this study. The intervention significantly reduced uncertainty scores. When the family member was a parent, when admissions were unexpected, and those with fewer social supports represent potential 'at risk' groups whose adaptation to transfer may limit their coping ability. The structured individualised method of transfer is recommended with further research of ICU families to further examine the dimension of uncertainty and how it affects patient outcomes.
2004
Mitchell ML; Courtney M
Intensive and Critical Care Nursing
2004
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.iccn.2004.05.008" target="_blank" rel="noreferrer">10.1016/j.iccn.2004.05.008</a>
"The worst journey of our lives": parents' experiences of a specialised paediatric retrieval service
Child; Humans; Intensive Care Units; Pediatric; retrospective studies; Nonparametric; Statistics; ICU Decision Making; Parents/psychology; London; Consumer Satisfaction/statistics & numerical data; Transportation of Patients/standards
In this retrospective study, a sample of 233 parents were surveyed, by means of a postal questionnaire, about their experience of a specialised paediatric retrieval service (median time interval after child's retrieval=10 months). Although all parents were routinely provided with written information about the retrieval service, only 46% remember receiving it. Also, although generally high, satisfaction ratings relating to the period of the child's transit were significantly lower (P<0.005) than those relating to the other stages of the transfer. Two main reasons were given by parents for their dissatisfaction: distress at being separated from their critically ill child and logistic problems locating and parking at the new hospital. Implications for future service provision are considered.
2003
Colville G; Orr F; Gracey D
Intensive and Critical Care Nursing
2003
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0964-3397(03)00022-3" target="_blank" rel="noreferrer">10.1016/s0964-3397(03)00022-3</a>
The impact of the social and physical environments on parent-healthcare provider relationships when a child dies in PICU: Findings from a grounded theory study
Child; Death; Environment; grounded theory; Paediatric intensive care unit; Parent-healthcare provider relationship
OBJECTIVES: This study explores the influences of the paediatric intensive care environment on relationships between parents and healthcare providers when children are dying. It forms part of a larger study, investigating parental experiences of the death of their child in intensive care. RESEARCH METHODOLOGY: Constructivist grounded theory. SETTING: Four Australian paediatric intensive care units. MAIN OUTCOME MEASURES: Audio-recorded, semi-structured interviews were conducted with twenty-six bereaved parents. Data were analysed using the constant comparison and memoing techniques common to grounded theory. FINDINGS: The physical and social environment of the intensive care unit influenced the quality of the parent-healthcare provider relationship. When a welcoming, open environment existed, parents tended to feel respected as equal and included members of their child's care team. In contrast, environments that restricted parental presence or lacked resources for parental self-care could leave parents feeling like 'watchers', excluded from their child's care. CONCLUSIONS: The paediatric intensive care unit environment either welcomes and includes parents of dying children into the care team, or demotes them to the status of 'watcher'. Such environments significantly influence the relationships parents form with healthcare staff, their ability to engage in elements of their parental role, and their experiences as a whole.
Butler AE; Copnell B; Hall H
Intensive And Critical Care Nursing
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.iccn.2017.12.008" target="_blank" rel="noreferrer">10.1016/j.iccn.2017.12.008</a>
"Some were certainly better than others" - Bereaved parents' judgements of healthcare providers in the paediatric intensive care unit: A grounded theory study
Child; Death; grounded theory; Health Personnel; Intensive care unit (paediatric); parent
OBJECTIVE: To explore bereaved parents' judgements of healthcare providers, as part of a larger study examining their perceptions of the death of a child in the paediatric intensive care unit. RESEARCH METHODOLOGY: Constructivist grounded theory. SETTING: Four Australian paediatric intensive care units. MAIN OUTCOME MEASURES: Semi-structured, audio recorded interviews were undertaken with 26 bereaved parents 6-48months after their child's death. Data were transcribed verbatim and analysed using open, focused and theoretical coding and the constant comparative method. FINDINGS: Bereaved parents judged healthcare providers as 'good' or 'poor' based on behaviours they exhibit. 'Good' behaviours were further subdivided by parents into four categories: 'Better than others', 'good', 'very good', and 'fantastic'. Common behaviours identified as 'good' included provision of practical assistance, facilitation of parental presence, and sharing of information. In contrast, the concept of 'poor' had no subdivision: all identified behaviours, including diminishing parental concern, mishandling hope, adopting an unprofessional demeanour, judging the child's worth, and mishandling communication, were equally detrimental. CONCLUSIONS: Findings demonstrate that bereaved parents have clear opinions on what constitutes 'good' and 'poor' behaviours when their child is dying. These judgements provide clear examples for healthcare providers who provide end-of-life care, ensuring they provide high quality care.
Butler AE; Copnell B; Hall H
Intensive And Critical Care Nursing
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.iccn.2017.12.003" target="_blank" rel="noreferrer">10.1016/j.iccn.2017.12.003</a>
Parents' Experience Of A Follow-up Meeting After A Child's Death In The Paediatric Intensive Care Unit.
Fundin Intensive Care Nursing Nurses Meetings Intervention Parents & Parenting Studies Interviews Families & Family Life Interdisciplinary Aspects Hospitals
Child Death; Follow-up; Picu; Paediatric Intensive Care; Parent's Experience; Qualitative
OBJECTIVE:
'To identify parents' experience of a follow up meeting and to explore whether the conversation was adequate to meet the needs of parents for a follow-up after their child's death in the Paediatric Intensive Care Unit (PICU).
DESIGN AND SETTING:
Qualitative method utilising semi-structured interviews with six pairs of parents 2-12 weeks after the follow-up conversation. The interviews were held in the parents' homes at their request. Data were analysed using a qualitative, descriptive approach and thematic analysis.
FINDINGS:
Four main themes emerged: (i) the way back to the PICU; (ii) framework; (iii) relations and (iv) closure.
CONCLUSION:
The parents expressed nervousness before the meeting, but were all pleased to have participated in these follow-up meetings. The parents found it meaningful that the follow-up meeting was interdisciplinary, since the parents could have answers to their questions both about treatment and care. It was important that the staff involved in the follow-up meeting were those who had been present through the hospitalisation and at the time of the child's death. Parents experienced the follow-up meeting as being a closure of the course in the PICU, regardless the length of the hospitalisation.
HL Brink
Intensive And Critical Care Nursing
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1016/j.iccn.2016.06.006
A Qualitative Study Of Nurse Observations Of Symptoms In Infants At End-of-life In The Neonatal Intensive Care Unit
End-of-life Care; Infant; Neonatal Intensive Care Unit; Qualitative; Symptoms
Fortney CA; Steward DK
Intensive And Critical Care Nursing
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1016/j.iccn.2016.10.004