The most painful estrangement: Death at birth
article; human; social support; palliative therapy; coping; mourning; stillbirth; guilt; depression; emotion; identity; suicide; posttraumatic stress disorder; personal experience; bereavement; avoidance behavior; emotional stress; child death; prevalence; decision making; family history; regret; emotional support; lactation; sadness; fear; continuing education; sorrow; community care; stigma; spontaneous abortion; self concept; shame; loneliness; alienation; complicated grief/dt [Drug Therapy]; family stress; naltrexone/dt [Drug Therapy]; rage; social bonding; traffic accident
More than two million babies a year die during or before birth around the world, evoking grief that is traumatic. Because the psychological, physical, social, and emotional ramifications of grief following a baby's death are so enduring and intense, social support is essential to helping families cope. In particular, emotional acts of caring and judicious use of language are crucial, avoiding the use of the terms that belittle the value of the baby's life and the importance of the baby as part of a family history. Traumatic grief informed continuing education can aid providers in increasing sensitivity to the needs of grieving families and minimize additional trauma and suffering in the aftermath of such loss.
Cacciatore J
Seminars in Perinatology
2024
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.semperi.2023.151870" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2023.151870</a>
Reiki intervention for supporting healthcare professional care behaviors in pediatric palliative care: A pilot study
burnout; care behavior; health care personnel; palliative therapy; psychologist; Reiki; alternative medicine; article; child; child psychology; clinical practice; clinical psychology; controlled study; diastolic blood pressure; emotional stress; heart rate; human; Italy; nurse; oxygen saturation; Palliative Care; Pilot Projects; pilot study; self care; special situation for pharmacovigilance; systolic blood pressure; work environment; workplace
OBJECTIVES: Pediatric healthcare professionals (HCPs) working in a palliative setting may experience challenges during their clinical practice in addressing the complex end-of-life phase of children and their families. Nurses, especially, have a frontline role in providing assistance, thereby becoming at risk of physical and psychological burden. Pediatric psychologists have an ethical responsibility to help colleagues by proposing self-care interventions that will improve their well-being and, indirectly, the work climate. This study investigated the impact of a complementary therapy, delivered by a pediatric psychologist and a nurse, on physical and psychological variables among nurses at the Paediatric Hospice of the Regina Margherita Children's Hospital in Italy. <br/>METHOD(S): Thirty-five nurses participated in 5 weeks of Reiki sessions for an overall total of 175 sessions. The effect of the sessions was analyzed through a paired t-test analysis comparing the values of heart rate, oxygen saturation, and systolic and diastolic pressure collected before and after each session. The same test was conducted comparing the values of the 3 burnout subscales for each of the 35 nurses collected before the beginning of the first session with those collected at the end of the last session 2 months later. <br/>RESULT(S): Results underlined a positive short-term effect with a significant decrease in heart rate before and after each session (t = 11.5, p < .001) and in systolic pressure (t = 2, p < .05). In addition, a decrease in emotional exhaustion symptoms was found (t = 2.3, p < .05) at the end of the intervention. SIGNIFICANCE OF RESULTS: Reiki could be a valid strategy to complement traditional pediatric psychology clinical practice designed to protect HCPs from emotional and physical demands and to create a more supportive workplace for staff and patients alike.
Zucchetti G; Ciappina S; Bottigelli C; Campione G; Parrinello A; Piu P; Lijoi S; Quarello P; Fagioli F
Palliative and Supportive Care
2023
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/10.1017/S1478951523001852" target="_blank" rel="noreferrer noopener">10.1017/S1478951523001852</a>
The Emotional Experience of Caring for Children in Pediatric Palliative Care: A Qualitative Study among a Home-Based Interdisciplinary Care Team
care behavior; emotion; palliative therapy; pediatrics; adult; article; burnout; case study; child; child death; collaborative care team; emotional stress; Emotions; female; health personnel attitude; home care; human; job satisfaction; male; Palliative Care; qualitative research; satisfaction; semi structured interview; thematic analysis
The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric palliative home care team. A qualitative case study was conducted, comprising 18 participants. A purposeful sampling technique approach was used including the home-based interdisciplinary pediatric palliative team. Data were collected via semi-structured interviews and researchers' field notes. A thematic analysis was performed. Two themes emerged: (a) changing life for the better, which described how professionals value life more and helping children and families provides compassion satisfaction, which is comforting and explains their dedication to care; (b) adverse effects of work highlighted the emotional burden of caring for children with life-limiting or life-threatening illnesses, which can affect their job satisfaction and may lead to burnout, showing how experiencing in-hospital child deaths with suffering leads professionals to develop an interest in specializing in pediatric palliative care. Our study provides information on possible causes of emotional distress in professionals caring for children with life-threatening illnesses and highlights strategies that can help them to reduce their distress.Copyright © 2023 by the authors.
Rico-Mena P; Gueita-Rodriguez J; Martino-Alba R; Castel-Sanchez M; Palacios-Cena D
Children
2023
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/10.3390/children10040700" target="_blank" rel="noreferrer noopener">10.3390/children10040700</a>
Moral distress, trauma and burnout in staff in relation to changes in picu outcomes, challenging cases and media involvement in disagreements about end-of-life care
burnout; emotional stress; morality; posttraumatic stress disorder; staff; terminal care; adult; awareness; child; conference abstract; controlled study; court; death; depersonalization; disability; human; life sustaining treatment; nurse; questionnaire; wellbeing
Background Technological advances have decreased PICU mortality but increased the number of children surviving with disability or technologically-dependent. Death in PICU most frequently follows withdrawal of life-sustaining therapy (LST), increasingly after prolonged admissions for invasive organ support. Disagreements with families about cessation of life-sustaining therapy (LST) can be protracted, distressing for everyone, harmful to the child and ultimately require court adjudication. Little is known about the impact of this, or of that of social/other media campaigns when families decides to involve the press, as is increasingly the case Method 50 staff (39 nurses; 9 doctors and 2 AHPs) were surveyed using the Moral Distress Scale-Revised (MD-R) ques-tionnaire; Trauma Screening Questionnaire (TSQ) and abbreviated Maslach Burnout Inventory (aMBI) together with several open-ended questions about their experiences and what they felt had been learned 3 months after the final court decision following one such high profile case. Results Mean moral distress score (MDS-R) was 96, consistent with recent Canadian multi-centre PICU study and higher than average Adult ICU scores (57-83 in the literature). Specifically, in relation to the recent high profile case 15% scored in the clinically significant range for post-traumatic stress symptoms (TSQ); a significant number reported a number of sub-clinical symptoms; 68% reported being 'upset by reminders of the event' and 53% reported 'heightened awareness of potential danger' to themselves and others at least twice in the previous week. Burnout symptoms (aMBI): 44% reported emotional exhaustion at a high level; 17% reported a high level of depersonalization. The 25% of staff considering leaving PICU reported higher burnout (emotional exhaustion) scores (p=0.001); higher post-traumatic stress scores (p=0.04) and were also less likely to feel supported in relation to moral distress (p=0.010). Conclusions These findings highlight the impact of changing PICU outcomes on staff, with increased survival of children with severe disability or technologically-dependent; and death following prolonged PICU admission sometimes after disagreements about cessation of LST, occasionally with public campaigns. They illustrate that the dimension of moral distress is one which needs to be acknowledged, along with burnout and post-traumatic stress² in a comprehensive assessment of staff well-being.
Colville G; Rutt M; Berger Z; Titman P; Brierley J
Archives of Disease in Childhood
2018
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/10.1136/archdischild-2018-rcpch.459" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2018-rcpch.459</a>
Single-center Experience Providing Palliative Care To Pediatric Patients With End-stage Renal Disease
End Stage Renal Disease; Palliative Therapy; Article; Child; Clinical Article; Consultation; Emotional Stress; Female; Human; Interdisciplinary Communication; Male; Medical Record Review; Parent; Social Support
Background: End-stage renal disease (ESRD) affects nearly 1400 new children each year in the United States. Morbidity and mortality rates remain high for pediatric patients with ESRD, including those that have received a renal transplant. Objective: To better understand ESRD patients referred to palliative care, including their physical symptoms, topics discussed, and themes emerging during initial palliative care consultation. Design/Subjects: This study is a retrospective chart review of pediatric ESRD patients who received a palliative care consult. Physical symptoms, core topics, and themes were identified by the interprofessional study team. Results: The study team found 35 patients met inclusion criteria during the study period. The most common standard palliative care metric noted was "complex or time-intensive communication and interdisciplinary social support." Pain was the most common physical symptom addressed with goals of care and communication the most common topics discussed. Themes emerging described the emotional distress of patients and parents as well as prognostic discussions. Conclusions: This study demonstrates one institution's experience with pediatric ESRD patients undergoing consultation with the pediatric palliative care service. More research is necessary in this population to better describe the best focus for palliative care teams.
Keefer P; Lehmann K; Shanley M; Woloszyk T; Khang E; Luckritz K; Saul D
Journal Of Palliative Medicine
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).
10.1089/jpm.2016.0353