Parent's Lived Experience of Memory Making With Their Child at or Near End of Life
child; end of life; lived experience; memory making; parent
BACKGROUND: Memory making is the process of creating mementos of a child with a life limiting condition, who may be at or near end of life, providing a tangible and visual connection to the child who has died. AIM: This study explored the lived experience a memory making process had on parents of children who were at or near end-of-life. DESIGN: A qualitative approach was used. Hermeneutic phenomenology methods provided guidance to the data collection, with a more limited interpretative phenomenological analysis conducted. SETTING: A purposive selected sample of 6 parents whose child had died and who had engaged in memory making participate. The sample was drawn from parents whose child had received care from a children's hospice. RESULTS: Individual interviews were conducted with 6 parents, all mothers. Three main themes emerged: Making the memories; the impact of memory making; and the end-of-life care journey. Parents experienced an overwhelmingly positive impact from memory making, as well as tangible and precious mementos that were created. The positive impact the process had on coping with grief and loss was also demonstrated, as well as the effect of helping to keep the deceased child's memory alive and include them in conversation. CONCLUSIONS: The importance of skilled and sensitive staff with the ability to introduce the concept of memory making, and choice at end of life were highlighted by the parents who took part. Clinicians may benefit from understanding how memory making can positively impact the bereavement experience of parents whose child has died.
Clarke T; Connolly M
American Journal of Hospice and Palliative Care
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/10.1177/10499091211047838" target="_blank" rel="noreferrer noopener">10.1177/10499091211047838</a>
Perinatal Palliative Care in the Neonatal Intensive Care Unit
Hospice and Palliative Care Nursing; Infant Newborn Diseases; Child; Female; Humans; Infant; Infant Newborn; Intensive Care Units Neonatal; Memory making; Neonatal palliative care; Palliative Care; Perinatal Care; Perinatal palliative care; Pregnancy; Resilience
With the frequency of infant deaths in the United States, many attributed to congenital malformations and prematurity, the neonatal intensive care unit (NICU) nurse must be adept at planning and providing perinatal palliative care. The NICU nurse requires education and training to proficiently contribute to the care planning and delivery of care and facilitate memory-making activities. The provision of perinatal palliative care may precipitate moral distress and needs to be addressed with education and resilience-fostering activities. To further perinatal palliative care effectiveness, research needs to be conducted.
Maher-Griffiths C
Critical Care Nursing Clinics of North America
2022
<a href="http://doi.org/10.1016/j.cnc.2021.11.008" target="_blank" rel="noreferrer noopener">10.1016/j.cnc.2021.11.008</a>
Parent's Lived Experience of Memory Making With Their Child at or Near End of Life
child; end of life; lived experience; memory making; parent
BACKGROUND: Memory making is the process of creating mementos of a child with a life limiting condition, who may be at or near end of life, providing a tangible and visual connection to the child who has died. AIM: This study explored the lived experience a memory making process had on parents of children who were at or near end-of-life. DESIGN: A qualitative approach was used. Hermeneutic phenomenology methods provided guidance to the data collection, with a more limited interpretative phenomenological analysis conducted. SETTING: A purposive selected sample of 6 parents whose child had died and who had engaged in memory making participate. The sample was drawn from parents whose child had received care from a children's hospice. RESULTS: Individual interviews were conducted with 6 parents, all mothers. Three main themes emerged: Making the memories; the impact of memory making; and the end-of-life care journey. Parents experienced an overwhelmingly positive impact from memory making, as well as tangible and precious mementos that were created. The positive impact the process had on coping with grief and loss was also demonstrated, as well as the effect of helping to keep the deceased child's memory alive and include them in conversation. CONCLUSIONS: The importance of skilled and sensitive staff with the ability to introduce the concept of memory making, and choice at end of life were highlighted by the parents who took part. Clinicians may benefit from understanding how memory making can positively impact the bereavement experience of parents whose child has died.
Clarke T; Connolly M
The American journal of hospice & palliative care
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/10.1177/10499091211047838" target="_blank" rel="noreferrer noopener">10.1177/10499091211047838</a>
Legacy Building in Pediatric End-of-Life Care through Innovative Use of a Digital Stethoscope
pediatric; palliative care; end-of-life; bereavement; music therapy; child life specialist; legacy making; mementos; memory making; parental/caregiver grief
Background: Legacy making has been the focus of recent literature; however, few studies examine how legacy making affects bereaved parents. Objective: To better understand legacy making's effect on bereaved parents, this study examined (1) the presentation of legacy making to parents, (2) parent satisfaction, and (3) parent utilization of the project. Design: Eko CORE (Eko Devices, Inc., Berkeley, CA), a digital stethoscope that generates a phonocardiogram, a graphical representation of S1 and S2 heart sounds, was used to record children's heartbeats as they approached end of life. The heartbeat was then overlaid to a song or voice recording or kept as a stand-alone file. An artistic embellishment of the phonocardiogram was also created. Parents were surveyed about their experience with the Music Therapy Heart Sounds (MTHS) program. Twelve parents completed the survey. Setting/subjects: Tertiary care children's hospital. The subjects were bereaved parents. Measurements: Five-question survey. Institutional Review Board review exempt. Results: All respondents would recommend the MTHS program to other families experiencing end-of-life decision making. Forty-two percent (N = 5) heard about the program from pediatric palliative physicians, and 50% (N = 6) heard about it from therapists such as music or child life. The respondents varied in how often they utilized their child's heartbeat recordings: 25% (N = 3) viewed or listened monthly, 33% (N = 4) not at all, 17% (N = 2) almost weekly, 17% less than monthly, and 8% (N = 1) daily. Conclusion: The MTHS program is an easy-to-implement and cost-effective way to perform legacy making that bereaved parents recommend for other families.
Andrews E; Hayes A; Cerulli L; Miller EG; Slamon N
Palliative Medicine Reports
2020
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/10.1089/pmr.2020.0028" target="_blank" rel="noreferrer noopener">10.1089/pmr.2020.0028</a>
Counseling For Personal Care Options At Neonatal End Of Life: A Quantitative And Qualitative Parent Survey Psychosocial
Neonate; Death; Memory Making
BackgroundThe death of a newborn is a traumatic life changing event in the lives of parents. We hypothesized that bereaved parents of newborn infants want to have choices in the personal care of their infant at the end of life.MethodsParents who had suffered a perinatal or neonatal loss between 1 and 6 years before the survey in a regional level IV neonatal intensive care unit (NICU) and associated labor and delivery room were invited to participate. Parents chose between an online survey, paper survey or telephone interview. The survey included multiple choice and open ended questions.ResultsParents prefer multiple options for the personal care of their infant at the end of life. Emergent themes were need for guidance by the medical team, memory making, feeling cared for and respected by staff, and regrets related to missed opportunities.ConclusionWhile parents differ in their preferences in utilizing specific personal care options for their infant’s end of life, they share a common preference for being presented with multiple options to choose from and in being guided and supported by healthcare providers, while being afforded the opportunity to make memories with their infant by bonding with and parenting them.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-015-0063-6) contains supplementary material, which is available to authorized users.
Shelkowitz E; Vessella SL; O'Reilly P; Tucker R; Lechner BE
Bmc Palliative Care
2015
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).
10.1186/s12904-015-0063-6