Compassionate Design: Applying Design Thinking Principles to Pediatric End-of-Life Care (FR452)
mourning; college; feasibility study; comfort; student; morality; conference abstract; injury; human; child; controlled study; terminal care; interview; staff; memory; intensive care unit; light; thinking; bath; illumination; job satisfaction; posthumous care; privacy
Objectives: *Discuss bereaved parent and staff perspectives regarding limitations for end-of-life care for children who die in intensive care units.*Explain the process of co-creation sessions, and identify opportunity concepts for improving end of life care in pediatric intensive care units.*Discuss multiple interventions to improve end-of-life care for children who die in intensive care units and their families. Approximately 70% of pediatric deaths at Cincinnati Children's (CCHMC) occur in an intensive care unit (ICU). Memories of the child's death critically impact the grieving process. Yet, ICU rooms are not designed for end-of-life (EOL) care. Space and privacy are limited; families may feel pressured to leave quickly after the child dies. Visitation policies limit family presence. Ritual bathing is difficult to accommodate. Some families desire to accompany the child through the basement to the morgue, a walk described as "unceremonious" and "stark". The Objectives of this study were to (i) understand EOL and post-mortem (PM) experiences of bereaved parents, how they relate to grief/mourning, (ii) understand EOL and PM experiences of staff, how they relate to job satisfaction/moral injury (iii) design new patient-centered, culturally sensitive processes and dedicated space for EOL and PM care. This project was a collaboration between CCHMC and a University of Cincinnati College of Design, Architecture, Art and Planning student design team, united through the Live Well Collaborative (LWC), a non-profit utilizing a design-thinking process to co-create innovations to improve health outcomes. LWC utilized human centered design in three phases: research, ideation and refinement. Research: LWC drew insights from a literature review and interviews with bereaved families and staff. The team designed an experience/journey map visually representing stakeholders' thoughts, experiences, and emotions throughout the EOL process. A feasibility/influence chart focused them on 3 improvement areas: privacy, transition from intensive care to legacy building, and parental control. Ideation: the team's co-creation sessions with parents and staff led to 7 opportunity concepts. Refinement: Concepts were tested and refined: room privacy lights, a comfort quilt, little reminders, announcement and spiritual lighting en route to the morgue, a remembrance garden and other spatial considerations. These were presented to the CCHMC team and other stakeholders for implementation.
Thienprayoon R; Lane J; Grossoehme D
Journal of Pain and Symptom Management
2019
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.jpainsymman.2018.12.147" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2018.12.147</a>
Dying child and nurses' mourning
Mourning; Nurse; Child; Death; Nurse; Nurse Care; Death; Child; Anger; Care; Child; Conference Abstract; Curriculum; Demography; Dying; Education; Guilt; Hospitalized Child; Human; Pediatric Hospital; Pediatric Nurse; Questionnaire; Sadness; Theoretical Study
Introduction: One of the most complex and emotional aspects of nursing is the interaction between the nurse and the dying child. The attitudes of nurses towards death, affect the quality of care. Objective(s): To investigate pediatric nurses' attitudes towards death. Method(s): Methodology: 170 nurses, working in pediatric hospital departments completed a questionnaire which included sociodemographic characteristics and information related to their previous training and clinical experience regarding death issues in general and dying children's care in particular. Result(s): 68.6% reported that the death of a child affects them very much, while 44.7% of the participants didn't feel well prepared to manage death issues. Pediatric nurses were greatly affected by children's death, expressing mainly feelings of sadness (44%), compassion (22%), guilt (22%) and anger (22%). 73% of the sample wished the hospitalized child, died when they were not present. 53.5% had been trained regarding the care of dying patients and the management of death and mourning as part of their curriculum and 21.2% had attended a relative seminar / lecture. The importance of proper and adequate education becomes particularly apparent considering that the majority of our sample either did not feel sufficiently prepared in order to deal with death and mourning, even though more than 70% of our participants had been relatively educated. Conclusion(s): The incorporation of the notions of death and care at end of life in the theoretical and practical fields of nursing will improve the quality of services offered at the end of life for patients and their families.
Zartaloudi A; Lekas C; Koutelekos I; Evangelou E; Kyritsi E
European Psychiatry
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/10.1192/j.eurpsy.2021.1075" target="_blank" rel="noreferrer noopener">10.1192/j.eurpsy.2021.1075</a>
Dying, mourning, and spirituality: A psychological perspective
mourning
1999
Marrone R
Death Studies
1999
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/10.1080/074811899200858" target="_blank" rel="noreferrer">10.1080/074811899200858</a>
From mourning and melancholia to bereavement and biography: an assessment of Walter's New Model of Grief
Grief; bereavement; mourning
1997
Stroebe MS
Mortality
1997
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/10.1080/714892787" target="_blank" rel="noreferrer">10.1080/714892787</a>
Little lights: Hospital bereavement photography program
human; child; female; terminal care; controlled study; major clinical study; gestational age; conference abstract; bereavement; nurse practitioner; mourning; child death; volunteer; burn; e-mail; infant; emergency ward; respiratory therapist; light; photography; hospital personnel; Work engagement
Description: Purpose: The Little Lights program is a novel, collaborative, nursing-led bereavement photography service created as a solution to the challenge of providing consistent high-quality bereavement photography for families and their dying infants. Little Lights was created by a multidisciplinary group including a professional photographer, provides professional bereavement photography training to staff, and uses a collaborative model involving photography performed by trained staff and edited by professional photographers to give families beautiful mementos of the brief window of time with their infant. The model provides consistent availability of high quality bereavement photographs validating their baby's life and solidifying the infant's importance within the family (Blood & Cacciatore, 2014). Overcoming the barrier of lack of 24-hour availability of volunteer professional photographers allows increased access for families which aids grieving, mourning, and healing for families who lose their child (Limbo & Kobler, 2010). Subjects: Families with an actively dying or deceased infant regardless of gestational age or physical condition. Women's Center staff who volunteer for training and participation in the program. Design: A nurse led complimentary bereavement photography program designed to function internally by collaboration between hospital staff and volunteer professional photographers. Methods: A multidisciplinary team created training sessions focusing on technical aspects of photography as well as culturally sensitive end-of-life care. Staff participation is voluntary, and a system was created for notification and designation of staff photographers during their normal work hours. A hospital approved form is used to obtain consent and email information from families, the photography session is performed, the images are sent to professional photographers who edit them, and the photographers email the images to the family. Results: Since initiation of the Little Lights program in December 2016 to May 2016, 29 staff from the Women's Center Departments and the Emergency Department have been trained. 21 of those trained were nurses, and other staff trained include physicians, respiratory therapists, nurse practitioners, unit secretaries, and volunteers. During this time period, there have been 55 infant deaths, and all families offered the program have consented to photography. All requested sessions have been successfully performed, converted into encrypted files, edited, and dispersed to families. Parental feedback and the described experience of trained hospital staff have been positive. Quality and process improvement is ongoing. Limitations: A current opportunity for improvement is the time needed for editing and delivery of photographs. The goal is to have photographs delivered to families within 72 hours so that they are available for memorial services; however, the current turn-around time is 2 weeks. Other limitations include a misplacement of equipment, rare challenges of staff availability, and the need for ongoing and new training. Implications for Practice: Little Lights addresses common problems experienced by hospitals attempting to provide bereavement photography. It is a sustainable model for the consistent provision of professional quality, compassionate, complimentary bereavement photography. In addition, the program encourages staff engagement with families during their time of need, participation in the grief process, and may help decrease symptoms of staff burn-out.
Vandergrift PS; Bryan D; Bishop C
Journal of Palliative Medicine
2018
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<a href="http://doi.org/10.1089/jpm.2018.29007.abstract" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.29007.abstract</a>
Meaning reconstruction in the experience of parental bereavement
Child; Grief; Family; Parents; Death; Attitude; Role; bereavement; knowledge; mothers; Meaning; mourning; child death
Grounded theory analysis was used to generate an explanation of the phenomenon of meaning reconstruction in the experience of 10 bereaved mothers. The theory that emerged included three phases in the process of meaning reconstruction: discontinuity, disorientation, and adjustment. The participants reinterpreted the meaning structures they had held prior to their child's death in order to give meaning to the death. The nature of the prior meaning structure merged as the core variable. The ability to restore meaning after the death of a child was clearly linked to the prior existence of a meaning structure that could account for and "place" the child's death. The findings suggest that the process of meaning reconstruction is a unique aspect of the grieving experience that cannot be explained by existing theories of grief. Recognition of the complexity of the process has implications for community members and professionals who interact with the bereaved parent.
1994
Braun Mildred J; Berg DH
Death Studies
1994
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/10.1080/07481189408252647" target="_blank" rel="noreferrer">10.1080/07481189408252647</a>
Mourning and meaning
Grief; bereavement; mourning
Viewed in an expanded frame, the phenomena of grief and bereavement call for analysis in sociological, psychological, and psychiatric terms. In this article, the authors argue that a common theme in these accounts is that of the meaning of loss as expressed in both individual and collective attempts at adaptation. At a societal level, communal rituals, discursive practices, and local cultures provide resources for integrating the significance of loss for survivors and regulating the emotional chaos of bereavement. At an individual and interpersonal level, survivors struggle to assimilate the loss into their existing self-narratives, which are sometimes profoundly challenged by traumatic bereavement. Complicated grief can therefore be viewed as the inability to reconstruct a meaningful personal reality, an outcome to which individuals with insecure working models of self and relationships are especially vulnerable. Nonetheless, evidence suggests that grief can promopt personal growth as well as despair, augmenting rather than only reducing the survivor's sense of meaning.
2002
Neimeyer RA; Prigerson HG; Davies B
American Behavioral Scientist
2002
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Journal Article
<a href="http://doi.org/10.1177/000276402236676" target="_blank" rel="noreferrer">10.1177/000276402236676</a>
Predictors of psychosocial distress after suicide, SIDS and accidents
Child; Grief; Family; Parents; Questionnaires; Death; Syndrome; bereavement; Interviews; infant; Health; Sudden Infant Death; grief reaction; infant death; mourning; SIDS
This article compares the outcome and predictors of psychosocial distress of parents bereaved by young suicides, sudden infant death syndrome (SIDS), and child accidents. One objective is to explore whether suicide bereavement is more difficult for those left behind than other forms of bereavement. Data have been collected from 140 families, consisting of 232 parents, by the use of the Impact of Event Scale, the General Health Questionnaires, and the Inventory of Traumatic Grief. Qualitative aspects of bereavement are assessed by in-depth interviews with family members from 40 families. The results show that the similarities between the samples on outcome and predictors are more striking that the differences, which is explained by the common traumatic aspect of unexpected and violent deaths. One and a half years post-loss, 57-78% of the survivors scored above the cut-off levels for traumatic grief reactions. Although no significant differences are found between survivors of suicide and accidents, both groups evidence significantly greater subjective distress than the survivors of SIDS. Self-isolation is by far the best predictor of psychosocial distress in all three samples. Rather than focusing on the exceptional position of suicide survivors, it seems important to call attention to sudden and traumatic death in general as a factor to be associated with post-traumatic reactions and complicated mourning.
2003
Dyregrov K; Nordanger D; Dyregrov A
Death Studies
2003
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Journal Article
<a href="http://doi.org/10.1080/07481180302892" target="_blank" rel="noreferrer">10.1080/07481180302892</a>
Siblings’ farewell to a stillborn sister or brother and parents’ support to their older children: a questionnaire study from the parents’ perspective
bereavement; sibling; Stillbirth; Grief; sibling bereavement; mourning
This study aims to capture parental descriptions of how siblings take leave of and mourn a stillborn brother or sister and how their parents support them. Data were collected by questionnaires from 16 parents of siblings to a stillborn child one year after the stillbirth. Data were analysed numerically for the multiple-choice questions and content analysis was used for parental comments and descriptions. The results describe siblings’ farewell to a stillborn brother or sister and how their parents in the midst of their own grief were involved in supporting siblings’ wellbeing, and observed their mourning reactions. Although the findings need to be interpreted with caution, they may provide insight that enables staff to become more sensitive to the whole family experience in the practice of their profession. Further research into siblings’ grief and parental support after stillbirth is crucial so that further light may be shed on their situation.
2010-06
Erlandsson K; Avelin P; Säflund K; Wredling R; Rådestad I
Journal Of Child Health Care
2010
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/10.1177/1367493509355621" target="_blank" rel="noreferrer">10.1177/1367493509355621</a>
Talking about the End of Life, Death and Bereavement with Children's Literature
Bereavement; Child; child; adult; article; female; human; major clinical study; male; palliative therapy; terminal care; mourning; bereavement; Only Child; adolescent
Abstract The French national centre of palliative and end-of-life care (Centre national des soins palliatifs et de la fin de vie) offers each year an updated selection of nearly 200 children's books for helping adults who accompany children who are seriously ill, facing an end-of-life situation, in mourning, or more simply curious about death. In 2022, 26 books out of the 46 published the previous year related to the themes of serious illness, palliative care, death, and bereavement were chosen by a multi-professional reading committee. The objective of this article is thus to present a brief description of some of these books for children and adolescents. These books can be recommended to the parents met.Copyright © Lavoisier SAS 2022. Aborder la fin de vie, la mort et le deuil autour de la littérature de jeunesse Résumé Le Centre national des soins palliatifs et de la fin de vie propose une sélection actualisée chaque année de près de 200 albums et romans issus de la littérature de jeunesse aux adultes accompagnant un enfant gravement malade, confronté à une situation de fin de vie, en deuil ou plus simplement curieux de ce qui a trait à la mort. En 2022, 26 ouvrages sur les 46 publiés l’année précédente, relatifs aux thématiques de la maladie grave, des soins palliatifs, de la mort et du deuil, ont été choisis par un comité de lecture pluriprofessionnel. L’objectif de cet article est ainsi de présenter une brève description de certains de ces ouvrages pour les tout-petits, les enfants et les adolescents. Ces ouvrages peuvent être recommandés aux parents rencontrés.
Tete C
Psycho-Oncology
2022
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<a href="http://doi.org/10.3166/pson-2022-0198" target="_blank" rel="noreferrer noopener">10.3166/pson-2022-0198</a>
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
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<a href="http://doi.org/10.1016/j.semperi.2023.151870" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2023.151870</a>
When Isaak was gone: An auto-ethnographic meditation on mourning a toddler
mourning
2004
Ironstone-Catterall P
Omega
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/10.2190/xwda-45ca-yhur-carf" target="_blank" rel="noreferrer">10.2190/xwda-45ca-yhur-carf</a>