Informing mothers of neonatal death and the need for family-centered bereavement care: A phenomenological qualitative study
grief; neonatal death; bereavement; burial; funeral rites
PURPOSE: To understand the lived experience of mothers surrounding the time of being informed of neonatal deaths in intensive care units. DESIGN: A phenomenological qualitative approach was employed. METHODS: Twelve mothers (age 24-41 years) were identified from the neonatal mortality records of two large neonatal intensive care units with high neonate turnover rates in Amman, Jordan. Data were collected using semistructured interviews with the participants. Interpretive phenomenology was used to generate themes regarding the essence of the mother's experience. RESULTS: Critical analyses of mothers' accounts revealed three major themes: (a) Minimize the hurt, which described how mothers intuited overprotection by their families while the news was conveyed indirectly to them; (b) The striking reality of death, which captured mothers' distressing experiences while realizing the loss of their neonates; and (c) Farwell my baby, which accentuated mothers' needs and experiences while neonates' bodies were honored and prepared for burial per the cultural norms in Jordan. PRACTICE IMPLICATIONS: Our findings highlighted the complex dynamics of familial interactions and cultural influences on mothers' bereavement experiences at the time of neonatal death. The grieving mothers expressed unfulfilled needs of receiving professional bereavement support at the time of neonatal death. Strategies are needed to optimize the supportive role of specialized nurses in providing family-centered bereavement care to mothers and their families who experience neonatal death.
Abdel Razeq NM; Al-Gamal E
Journal for Specialists in Pediatric 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/10.1111/jspn.12328" target="_blank" rel="noreferrer noopener">10.1111/jspn.12328</a>
Neonatal and perinatal palliative care pathway: A tertiary neonatal unit approach
palliative care; neonatology; perinatal; bereavement; care pathway
A lack of well-structured guideline or care pathway results in inadequate, inconsistent and fragmented palliative care (PC) for babies and their families. The impact on the families could be emotionally and psychologically distressing. Not all neonatal units have specialist PC clinicians or teams, and such units will benefit from a well-planned perinatal PC pathway. In this article, we discuss a tertiary neonatal unit perinatal care pathway which provides guidance from the point of diagnosis and establishment of eligibility of a baby for PC through to care after death and bereavement support for families. Planning PC with families which encourages family-centred and individualised approach is also discussed. Copyright © 2021 BMJ Publishing Group. All rights reserved.
Akyempon AN; Aladangady N
BMJ Paediatrics Open
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/10.1136/bmjpo-2020-000820" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2020-000820</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>
Evaluation of a grandparent bereavement support group in a Pediatric Palliative Care Hospice
bereavement; grandparents; grief; hospice care; pediatric palliative care
This study aimed to explore grandparents' experiences of grief after the death of a grandchild, their perception of socially supportive behavior as well as their satisfaction with a bereavement support care. A six-session bereavement support group was implemented, followed by a cross-sectional survey with open-ended questions. The death happened mostly in the last 2 years (26, 90%). The findings revealed the presence of grief (mean score of 67, SD 13) and existing perception of socially supportive behaviors (mean score of 79, SD 23) after participation in the bereavement group. The thematic analysis showed three themes of 'We are feeling it; There are ways to heal and return to a different normal; We want to help our family'. This study adds to the existing literature about the experience of grandparents coping with grief, explores some of their challenges, and needs after the death of a grandchild. Copyright © 2021 Informa UK Limited, trading as Taylor & Francis Group.
Arnone M; Dumond LG; Yazdani N; El-Baroudi R; Pouliot A; Modanloo S
Progress in 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/10.1080/09699260.2021.1988311" target="_blank" rel="noreferrer noopener">10.1080/09699260.2021.1988311</a>
Healthcare Satisfaction and Unmet Needs Among Bereaved Parents in the NICU
Neonatal intensive care; Newborn Infant; Bereavement; Delivery of Health Care; Infant; Needs Assessment; Palliative Care; Parents; Personal Satisfaction; Prospective Studies; Terminal Care
BACKGROUND: Learning directly from bereaved parents about their experiences in the neonatal intensive care unit (NICU) can improve services at end-of-life (EOL) care. Parents who perceive that their infant suffered may report less satisfaction with care and may be at greater risk for distress after the death. Despite calls to improve EOL care for children, limited research has examined the EOL experiences of families in the NICU. PURPOSE: We examined parent perceptions of their infant's EOL experience (eg, symptom burden and suffering) and satisfaction with care in the NICU. METHODS/SEARCH STRATEGY: Forty-two mothers and 27 fathers (representing 42 infants) participated in a mixed-methods study between 3 months and 5 years after their infant's death (mean = 39.45 months, SD = 17.19). Parents reported on healthcare satisfaction, unmet needs, and infant symptoms and suffering in the final week of life. FINDINGS/RESULTS: Parents reported high levels of healthcare satisfaction, with relative strengths in providers' technical skills and inclusion of the family. Greater perceived infant suffering was associated with lower healthcare satisfaction and fewer well-met needs at EOL. Parents' understanding of their infant's condition, emotional support, communication, symptom management, and bereavement care were identified as areas for improvement. IMPLICATIONS FOR PRACTICE: Parents value comprehensive, family-centered care in the NICU. Additionally, monitoring and alleviating infant symptoms contribute to greater parental satisfaction with care. Improving staff knowledge about EOL care and developing structured bereavement follow-up programs may enhance healthcare satisfaction and family outcomes. IMPLICATIONS FOR RESEARCH: Prospective studies are needed to better understand parental perceptions of EOL care and the influence on later parental adjustment.
Baughcum AE; Fortney CA; Winning AM; Dunnells ZDO; Humphrey LM; Gerhardt CA
Advances in Neonatal Care
2020
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<a href="http://doi.org/10.1097/ANC.0000000000000677" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000677</a>
The Long Road to Farewell: The Needs of Families With Dying Children
cancer; pediatric palliative care; bereaved parents; bereavement; trauma
Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child's death. However, there is a dearth of research on these families' direct, qualitative experiences with health-care providers. This study presents findings from interviews with 18 family members, predominantly parents, regarding their experiences with health-care providers during a child's terminal illness, from diagnosis to death. The importance of compassion emerged as a salient theme, manifested in myriad ways, and connected to participants' perception of caregiver presence in multiple domains. Families were likewise negatively affected by a wide variety of situations and behaviors that represented individual or institutional abandonment or nonpresence, and thus compounded the experience of loss. Specifics and implications for practice are explored.
Cacciatore J; Thieleman K; Lieber AS; Blood C; Goldman R
Omega
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/10.1177/0030222817697418" target="_blank" rel="noreferrer noopener">10.1177/0030222817697418</a>
Parent Perceptions of Infant Symptoms and Suffering and Associations With Distress Among Bereaved Parents in the NICU
grief; palliative care; end of life; NICU; parents; bereavement
CONTEXT: Healthcare providers and parents face many challenges caring for infants at the end of life (EOL). Symptom assessment and management in critically ill infants can be especially difficult. However, the impact of the infant's EOL experience on bereaved parents is largely unknown. OBJECTIVE: Explore associations between parental perceptions of infant symptoms and suffering at EOL in the neonatal intensive care unit (NICU) and parent adjustment following the death. METHODS: Retrospective, cross-sectional pilot study involving parents of infants who died within the previous five years in a large, Midwestern, level IV NICU. Parents were recruited through mailed invitations, and 40 mothers and 27 fathers participated from 40 families. Parents retrospectively reported on infant symptom burden and suffering during the last week of life and the Impact of Events Scale-Revised (IES-R), and Prolonged Grief-13 (PG-13). Hierarchical regressions examined demographic/medical factors and parent perceptions at EOL in relation to post-traumatic stress symptoms (PTSS) and prolonged grief (PG). RESULTS: Clinical levels of PTSS (Mothers = 18%; Fathers = 11%) and PG (Mothers and Fathers = 3%) were low. Maternal perception of higher symptom burden was associated with greater PTSS, R2 = 0.46, P= 0.001, and PG, R2 = 0.47, P < 0.01. Paternal perception of greater infant suffering was associated with greater PTSS, R2 = 0.48, P= 0.001, and PG, R2 = .38, P < 0.01. CONCLUSION: Perceptions of symptoms and suffering were associated differently with mother and father adjustment after bereavement. While not necessarily causal, better symptom management at EOL could minimize distress for both infants and their parents.
Clark OE; Fortney CA; Dunnells ZDO; Gerhardt CA; Baughcum AE
Journal of Pain and Symptom Management
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.jpainsymman.2021.02.015" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.02.015</a>
Developing a theoretically grounded, digital, ecological momentary intervention for parental bereavement care using the ORBIT model-Phase 1
bereaved parents; bereavement; Parent's experience; web-based intervention
Current models of bereavement care do not address all of bereaved parents' unique needs. Diverse challenges limit parents' ability to access certain bereavement services. A web-based intervention prototype for bereaved parents was developed. Using convenience and snowball techniques, 14 participants (pediatric providers, software developers, and bereaved parents) were enrolled in a descriptive, cross-sectional feasibility and usability study. While the intervention was generally considered acceptable, three themes were identified to enhance its usability and acceptability: timing; delivery; and revisions. Further intervention development is needed to improve both short- and long-term physical and psychological outcomes for bereaved parents.
Dias N; Boring E; Johnson L; Grossoehme DH; Murphy S; Friebert S
Death Studies
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/10.1080/07481187.2021.1914239" target="_blank" rel="noreferrer noopener">10.1080/07481187.2021.1914239</a>
Parental Relationships following the Loss of a Child
bereavement; grief; Loss of child; parental relationship
To enhance understanding of parental relationships following the loss of a child, a questionnaire was sent to members of Norwegian bereavement support organizations. The sample consisted of 175 couples. Using the Dyadic Adjustment Scale (DAS), we found that an individual’s ability to talk to a partner about own feelings positively correlated with fewer problems and higher satisfaction and cohesion in the couple. Couples felt closer to one another following the loss and were pleased with their relationship. Early intervention may help couples navigate the changes necessitated in a relationship by the loss of a child and prevent negative dyadic changes.
Dyregrov A; Gjestad R; Dyregrov K
Journal of Loss and Trauma
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/10.1080/15325024.2019.1666482" target="_blank" rel="noreferrer noopener">10.1080/15325024.2019.1666482</a>
Maternal Grief: A Qualitative Investigation of Mothers' Responses to the Death of a Child From Cancer
Adaptation; Attitude to Death; Bereavement; Childhood Neoplasms – Mortality; Complicated Grief; Coping; Female; Grief; Interviews; Mothers – Psychosocial Factors; Phenomenological Research; Psychological; Qualitative Studies; Self Concept; Social Environment
This study explored bereaved mothers' responses to the death of a child from cancer, with a focus on identifying adaptive and complicated grief reactions. To understand the unique meaning of their loss, in-depth interviews were conducted with 13 mothers at two time points. Interpretative phenomenological analysis—guided by meaning-making theories of loss—revealed five master categories: the perceptions of the child's life with cancer and death from the disease, changed self-identity, coping style, developing an ongoing relationship to the deceased child, and the postdeath social environment. Each of these master categories and associated subthemes provided insights into the characteristics of the bereaved mothers' adaptive and complicated grief responses to their loss. Given all the mothers evidenced multiple forms or types of these responses over time, they could not be categorized as adaptive or complicated grievers. However, the varying proportions of each of these responses highlighted differences in overall bereavement adaptation.
Gerrish NJ; Bailey S
Omega
2020
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<a href="http://doi.org/10.1177/0030222818762190" target="_blank" rel="noreferrer noopener">10.1177/0030222818762190</a>
Availability and Quality of Grief and Bereavement Care in Pediatric Intensive Care Units Around the World, Opportunities for Improvement
grief; end of life; pediatric palliative care; bereavement; pediatric critical care
Pediatric Intensive Care Units (PICUs) provide multidisciplinary care to critically ill children and their families. Grief is present throughout the trajectory of illness and can peak around the time of death or non-death losses. The objective of this study was to assess how PICUs around the world implement grief and bereavement care (GBC) as part of an integrated model of care. This is a multicenter cross-sectional, prospective survey study. Questionnaires with multiple-choice and open-ended questions focusing on unit infrastructure, personnel, policies, limited patient data, and practices related to GBC for families and health care professionals (HCPs) were completed by on-site researchers, who were HCPs on the direct care of patients. PICU fulfillment of GBC goals was evaluated using a custom scoring based on indicators developed by the Initiative for Pediatric Palliative Care (IPPC). We compared average total and individual items fulfillment scores according to the respective country's World Bank income. Patient characteristics and details of unit infrastructure were also evaluated as potential predictors of total GBC fulfillment scores. Statistical analysis included multilevel generalized linear models (GLM) with a Gaussian distribution adjusted by child age/gender and clustering by center, using high income countries (HICs) as the comparative reference. Additionally, we applied principals of content analysis to analyze and summarize open-ended answers to contextualize qualitative data. The study included 34 PICUs from 18 countries: high-income countries (HICs): 32.4%, upper middle-income countries (UMICs): 44.1%, low middle-income and low-income countries (LMI/LICs): 23.5%. All groups reported some compliance with GBC goals; no group reported perfect fulfillment. We found statistically significant differences in GBC fulfillment scores between HICs and UMICs (specifically, HCP grief support), and between HICs and LMICs (specifically, family grief support and HCP grief support). PICUs world-wide provide some GBC, independent of income, but barriers include lack of financial support, time, and training, overall unit culture, presence of a palliative care consultation service, and varying cultural perceptions of child death. Disparities in GBC for families and HCPs exist and were related to the native countries' income level. Identifying barriers to support families and HCPs, can lead to opportunities of improving GBC in PICUs world-wide.
Grunauer M; Mikesell C; Bustamante G; Aronowitz D; Zambrano K; Icaza-Freire AP; Gavilanes AWD; Barrera R
Frontiers in Pediatrics
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/10.3389/fped.2021.742916" target="_blank" rel="noreferrer noopener">10.3389/fped.2021.742916</a>
Cold bedrooms' and other cooling facilities in UK children's hospices, how they are used and why they are offered: A mixed methods study
grief; paediatric palliative care; bereavement; Cold bedrooms; cold cot; cooling blanket; cooling facilities
BACKGROUND: The death of a child is acutely distressing. Evidence on the benefits and value to parents of spending time with their dead child have now been integrated into routine practice and is regarded as a bereavement support intervention. UK children's hospices have a tradition of using 'cooling facilities' (cold bedrooms, cooled blanket/mattress) to extend this period of time by slowing deterioration of the body. AIMS: To describe: (1) type and use of cooling facilities in UK children's hospices, policies and practices regarding their use, and any changes over time. (2) Director of care's views on the purpose of cooling facilities and the rationale for hospice-specific practices. METHODS: An explanatory mixed-methods design consisting two phases: a crosssectional survey of directors of care of UK children's hospices (n = 52) followed by semi-structured telephone interviews with a sub-sample of respondents. Survey data were analysed using descriptive statistics and interview data using directed content analysis. RESULTS: 41/52 hospices completed the survey and 13 directors of care were interviewed. All hospices had cooling facilities. Some offered use of portable cooling facilities at home, though take-up appears low. Hospices differed in approaches to managing care and duration of use. Views on whether parents should observe deterioration informed the latter. Directors of care believed they provide families with time to say 'goodbye' and process their loss. Challenges for staff were reported.
Hackett J; Beresford B
Palliative Medicine
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/10.1177/0269216320984335" target="_blank" rel="noreferrer noopener">10.1177/0269216320984335</a>
It was like an airbag, it cushioned the blow': A multi-site qualitative study of bereaved parents' experiences of using cooling facilities
Bereavement; grief; qualitative; paediatric palliative care; cold cot; cooling blanket; cooling facilities; cold bedrooms
BACKGROUND: Evidence on the benefits to parents of spending time with their child in the hours after their death means this is now routine practice. UK children's hospices offer parents the opportunity to extend this period by using cooling facilities (i.e. cooled 'bedrooms'; cooling blankets/mattresses) to slow deterioration. AIM: To explore parents' experiences of using cooling facilities and beliefs about how it shaped experiences of the very early days of bereavement, and on-going grieving processes. METHODS: Multi-site study involving in-depth interviews with parents bereaved in the previous 3 years. Grief theories informed data analysis, which employed narrative and thematic approaches. Eight hospices supported recruitment. RESULTS: Twenty-two mothers and eight fathers were recruited, representing 25% of families approached. Duration of use of a cooling facility varied, as did the amount of time spent with the child. All parents treasured this period, valuing the way it eased separation from their child and gave some control over when this happened. They believed all bereaved parents should have the opportunity to use a cooling facility. Using a cooling facility supported parents' engagement with grief tasks including acceptance of loss, processing emotional pain and facing changes to their lives brought about by their child's death. Memories and mementoes created during this period served to support on-going connections with the child. Parents who used a cooling facility at a hospice reported benefits of the setting itself. CONCLUSIONS: As well as easing the very early days of loss, use of cooling facilities may influence longer-term bereavement outcomes.
Hackett J; Heavey E; Beresford B
Palliative Medicine
2022
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<a href="http://doi.org/10.1177/02692163211059345" target="_blank" rel="noreferrer noopener">10.1177/02692163211059345</a>
Staff and Parent Perspectives on a Therapeutic Recreation-Based Bereavement Camp for Families Whose Child Has Died From Serious Illness
parent perspectives; staff perspectives; model; family; therapeutic recreation; bereavement; childhood illness
This study explores the nature of a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Open-ended surveys and interviews were conducted with parents attending a three-camp cycle over a 12-month period or a reunion camp. Thirteen parents completed open-ended surveys before and after each camp and six of these also completed interviews after the final camp. Six additional parents completed interviews after the reunion camp. Six staff working with families during the camps were also interviewed. Content analysis of surveys and thematic analysis of interviews revealed the aims, structure, and content of the camp. The findings suggest a model whereby shared experience allows for normalization and offers a nonjudgmental place to share stories, discuss difficulties come together as a family, and create a support network. These findings highlight the value of therapeutic recreation-based bereavement interventions for families whose child has died from serious illness.
Hanlon P; Kiernan G; Guerin S
Omega
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/10.1177/0030222819863919" target="_blank" rel="noreferrer noopener">10.1177/0030222819863919</a>
The Phenomenon of Bereaved Parenting: An Integrative Review of Literature
Emotions; Psychology; Communication; Bereavement; Survivors; Conflict (Psychology); Human; Coping; Parenting; Grief; Social Work; Parents -- Psychosocial Factors; Systematic Review; Parental Role; Family Role; Science
Bereaved parenting, a role that entails parenting surviving children after experiencing the death of a child, is a unique but understudied phenomenon within bereavement research. Not much is known about the impact of a child's death on this crucial familial role. An integrative review of literature of 20 studies across psychology, nursing, communications, social work, and family sciences was undertaken to determine the current state of science regarding bereaved parenting. Results revealed three influential contexts: the general context of parental grief and bereavement, described as traumatic and life-changing experiences; the personal context of the resulting parental changes and coping strategies; and the relational context of the subsequent parenting of surviving children, an experience characterized by periodic conflict between personal and children's needs, emotional fluctuations, challenges with levels of protectiveness and control, and a heightened sense of responsibility within the parental role. Discussion of results and implications for research are presented.
Haylett WJ; Scott Tilley D
Omega: Journal of Death & Dying
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/10.1177/0030222818819350" target="_blank" rel="noreferrer noopener">10.1177/0030222818819350</a>
Parenting Surviving Children After the Death of a Child from Cancer: An Interpretative Phenomenological Analysis
parenting; pediatric cancer; bereavement; interpretive phenomenological analysis; surviving
The death of a child is a tragic, devastating event with enormous emotional and relational impact on the family unit. Parental changes are significant, encompassing the psychological, physical, spiritual, and interpersonal realms. Little bereavement research has focused on the crucial familial role of parenting or the relationship between bereaved parents and their surviving children after another child’s death. A noteworthy gap likewise exists in current literature regarding the experience of parenting within families who suffered the death of a child due to an extended, life-limiting illness such as cancer. This interpretative phenomenological analysis addresses the gap by exploring the lived experience of those who parent surviving children after their child’s cancer death. Seven mothers and four fathers (n = 11) across the United States participated in video or face-to-face semi-structured individual interviews. Parents had a range of 1–2 surviving children whose ages spanned 23 months-18 years (M = 8.27; SD = 5.07) at the time of their sibling’s death (M = 5.43 years earlier; SD = 3.17). Data analysis revealed two primary themes. “A New Mind” denotes bereaved parents’ new, contrasting mindsets regarding self-view, daily motivators, perceived locus of control, perspective, boundaries for children, direction of focus, and outside relationships. “Be Beside Me” highlights parents’ deep desire that others come alongside them by validating their emotions and experience and providing opportunities for family renewal. Clinicians working with bereaved families should have awareness of and consider parents’ changed perspectives, challenges, and supportive needs in order to deliver family-centered care and enrich existing services and support programs.
Haylett WJ; Scott-Tilley D; Spencer B; Hwang SH; Foster Akard T
Journal of Child and Family Studies
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/10.1007/s10826-021-02027-w" target="_blank" rel="noreferrer noopener">10.1007/s10826-021-02027-w</a>
Parental Perceptions of Hospital-Based Bereavement Support Following a Child's Death From Cancer: Room for Improvement
bereavement; bereavement support; Child; childhood cancer; Grief; Hospitals; Neoplasms/therapy; Parents; Perception
CONTEXT: The death of a child from cancer is a devastating event, placing bereaved parents at risk for both physical and psychosocial morbidities. Despite growing awareness of these outcomes and increased hospital-based support, bereaved parents continue to express a desire for additional assistance. OBJECTIVES: We examined parental perceptions of bereavement support from the clinical teams and institution and suggested modifications to hospital support strategies. METHODS: We explored the answers to four questions on the bereavement support provided from the care team and institutional mailings from a larger survey, querying parents of children who died from cancer 6 to 24 months prior to participation. Answers were Likert scale based with additional free-text responses. RESULTS: Forty-nine parents completed the survey (response rate 36%). The respondents were predominantly white (N = 43, 88%), female (N = 32, 65%), and non-Hispanic/Latino (N = 43, 88%). The mean length of time from child's death to completion was 13 months. Twenty-seven (55%) and 26 (53%) parents indicated that contact with care team and mailings, respectively, were at least a little helpful in their grief experience. In free-text responses, parents identified support outside the hospital (28 respondents), groups and events hosted by the hospital or hospice (8), contact with care team (3), and hospital mailings (1) as the most helpful. Findings support modifications to hospital support strategies. CONCLUSIONS: Bereaved parents request additional supportive services. Using the parents' perspective and recommendations, we outline options to augment support and provide a variety of supportive resources for bereaved parents to access in their own time.
Helton G; Morris SE; Dole OR; Wolfe J; Snaman JM
J Pain Symptom Manage
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.jpainsymman.2020.11.012" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.11.012</a>
Grieving the loss of a child in times of COVID-19
Bereavement; Parents; Family Members; Couples; Grief; COVID-19; Pandemics; Child Loss
Given the massive influences of COVID-19 restrictions on people in nearly all nations, we conducted an in-depth qualitative study of 15 Belgian parents who had lost a child prior to the pandemic in order to understand its impact on their ongoing bereavement. Analysis of focus group sessions and couples interviews distinguished between experiences related to the pandemic and those related to resulting governmental restrictions (e.g., lockdown, social distancing). We theoretically framed our findings in terms of the dual processes of orienting to loss versus restoring life, reconstructing meaning in bereavement, and relationally attuning as a couple to a shared loss. We found that the COVID period accentuated all losses, awakening the parents’ grief for their own loss and their empathy for others. At the same time, they experienced limited opportunities for restoration-oriented distraction through connection with familiar activities and relationships beyond the family. Control or choice in this process of oscillation between orienting to grief versus ongoing life was impaired by the pandemic, as parents struggled to find a new dynamic balance to compensate for the risk of continuous engagement with reminders of their loss. Most notable was their close proximity as a couple, while being at a greater distance from the social network. The continuous attunement process between partners and family members played out in a process of drawing close and interposing distance, of grieving apart and together, of talking about grief and holding silence. We close by reflecting on the implications of our findings for clinical practice. (PsycInfo Database Record (c) 2021 APA, all rights reserved)
Hooghe A; Claeys A; Thompson B; Neimeyer RA; Rober P
Couple and Family Psychology: Research and Practice
2021
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<a href="http://doi.org/10.1037/cfp0000180" target="_blank" rel="noreferrer noopener">10.1037/cfp0000180</a>
A photovoice study on the bereavement experience of mothers after the death of a child
bereavement; loss of a child; parental experience; pediatric oncology; photovoice
This study explored the bereavement experience of mothers after losing a child to cancer in Korea, using photovoice. The mothers took photos reflecting five subject areas they selected: (a) if I had one more day with my child, (b) memories with my child, (c) dreaming of my child's healthy future, (d) what gave me strength, and (e) fulfilling my child's wishes for the future. The findings show that mothers who lost a child to cancer need bereavement care to promote well-being. This study can help pediatric oncology providers develop bereavement interventions that address parental grief and improve quality of life.
Kim MA; Yi J; Sang J; Jung D
Death Studies
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/10.1080/07481187.2019.1648333" target="_blank" rel="noreferrer noopener">10.1080/07481187.2019.1648333</a>
Challenges in preloss care to parents facing their child's end-of-life: A qualitative study from the clinicians perspective
Pediatrics; palliative care; bereavement; end of life care; Health personnel
INTRODUCTION: Bereavement care for parents predominantly focuses on care after child loss. However, Health Care Professionals (HCPs) feel responsible for supporting parents who are grieving losses in their child's end-of-life. Preloss care is tailored to the parents' needs, thus highly varying. To better understand the nature of preloss care, this study aims to gain insight into the challenges HCPs encounter while providing care for parents during their child's end-of-life. METHODS: Exploratory qualitative research using semi-structured interviews with physicians and nurses working in neonatology and pediatrics in 3 university pediatric hospitals and 1 child home care service. A multi-disciplinary team thematically analyzed the data. RESULTS: Twenty-two HCPs participated in this study. From the HCPs' inner perspective, three dyadic dimensions in preloss care delivery were identified that create tension in HCPs: sustaining hope versus realistic prospects, obtaining emotional closeness versus emotional distance, and exploring emotions versus containing emotions. Throughout preloss care delivery, HCPs weighed which strategies to use based on their perception of parental needs, the situation, and their own competencies. HCPs remained with lingering uncertainties on whether the preloss care they provide constituted optimal care. CONCLUSION: As a result of the experienced tension, HCPs are at risk for prolonged distress and possibly even compassion fatigue. In order to maintain a positive emotional balance in HCPs, education should focus on adapting positive coping strategies and provide hands-on training. Furthermore, on an institutional level a safe environment should be fostered and well-being could be enhanced through learning by sharing as a team.
Kochen EM; Teunissen SCCM; Boelen PA; Jenken F; de Jonge RR; Grootenhuis MA; Kars MC
Academic Pediatrics
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.acap.2021.08.015" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2021.08.015</a>
Assessment of Bereaved Caregiver Experiences of Advance Care Planning for Children With Medical Complexity
Preschool Child; Advance Care Planning; Bereavement; Caregivers; Child; Infant; Interviews as Topic; Male; Multimorbidity; Parents; Terminal Care
Importance: Advance care planning (ACP) is the process of discussing values and preferences for care to help inform medical decision-making. Children with medical complexity (CMC) often have a shortened life span with an unpredictable clinical course and timing of death; however, there is a paucity of literature that describes the experience of ACP from the perspective of bereaved family caregivers of CMC. Objective: To explore the experiences of bereaved family caregivers with ACP for CMC. Design, Setting, and Participants: This qualitative study included 12 interviews with 13 bereaved family caregivers of CMC whose deaths had occurred in the 5 years before study commencement (2013-2018). Participants were recruited at a single tertiary care pediatric center; CMC were treated by the Complex Care or Long-term Ventilation clinic in Toronto, Ontario, Canada. Data were collected from July to October 2018. Thematic analysis with an inductive approach was used. Exposures: Qualitative interviews were conducted using purposive sampling of bereaved family caregivers using semistructured interviews that were recorded and transcribed. Interviews were conducted until saturation was reached. Main Outcomes and Measures: Transcripts were analyzed to create themes that characterized caregiver experiences with ACP. Results: A total of 13 family caregivers were interviewed in 12 interviews, all of whom were parents (12 [92%] women, 1 [8%] man) of a deceased child (aged 7 months to 12 years). Themes were divided in the 3 following categories, which align with the Donabedian model for health service quality: (1) structure of care, (2) ACP process, and (3) end-of-life experience. Notable subthemes for this population included the importance of accounting for parental expertise in the child's care, recurrent experiences with life-threatening events, relative shock of the timing of death, and the multiple losses that caregivers experienced. Conclusions and Relevance: In this study, parental experiences revealed that there are key aspects of the structure of the child's care, process around ACP, and end-of-life care experiences that provide important reflections on ACP that warrant future study.
Lord S; Moore C; Beatty M; Cohen E; Rapoport A; Hellmann J; Netten K; Amin R; Orkin J
JAMA Network Open
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/10.1001/jamanetworkopen.2020.10337" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2020.10337</a>
Losing a child due to a life-limiting diagnosis-parental well-being and quality of life: nationwide survey
terminal care; quality of life; paediatrics; bereavement
OBJECTIVE: Losing a child is burdensome with potential long-term impact on the parents' well-being and quality of life. The aim was to investigate parental well-being and quality of life 3-5 years after losing a child due to life-limiting diagnoses and to identify associated factors in order to target future interventions. METHODS: All parents, who lost a child (<18 years) due to life-limiting diagnoses in the period 2012-2014 in Denmark, were invited to complete a self-administered questionnaire. A seven-point Visual Digital Scale (VDS) was used to assess issues of well-being and quality of life including physical health, anxiety, depression and sleep quality which were combined into a cumulative symptom index. Associations were assessed by means of ordinal logistic regression models. RESULTS: In all, 152 (38%) children were represented by 136 mothers and 57 fathers. Totally, 17.6% of the mothers and 14.0% of the fathers had ≥2 symptoms (assessed by the symptom index). Parents with lower education had 2.11 (95% CI: 1.01 to 4.40) times higher odds of having more symptoms than parents with higher education. Unmarried parents had 2.14 (95% CI: 1.03 to 4.42) times higher odds of having more symptoms than married parents. Ten per cent of the parents reported poor overall quality of life. CONCLUSION: According to the VDS, 1 out of 10 parents experienced poor overall quality of life 3-5 years after the loss. Every sixth had two or more symptoms assessed by the symptom index. Associated factors for poor quality of life suggest attention to particularly unmarried parents and parents with lower education.
Lykke C; Sjøgren P; Ekholm O
BMJ Supportive & 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/10.1136/bmjspcare-2021-003251" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2021-003251</a>
Perinatal palliative care
Bereavement; Child; Infant; Life-limiting condition; Life-threatening condition; Neonatal death; Newborn; Palliative Care; Perinatal Care; Perinatal palliative care; Pregnancy; Quality of Life
Perinatal Palliative Care is a model of care designed to prevent and treat the physical, spiritual, emotional, and social needs of fetuses and newborn infants with life-threatening or life-limiting conditions. The care extends to the infant's family. It is delivered by an interdisciplinary team to improve the quality of life from the time of diagnosis (possibly in utero) into death and bereavement (days, months or years later). To guarantee the access of this vulnerable population to high quality palliative care, structured programs and protocols need to be further developed in tertiary hospitals that treat highly complex obstetric and neonatal pathologies. Basic training is required for all the professionals involved.
Martín-Ancel A; Pérez-Muñuzuri A; González-Pacheco N; Boix H; Espinosa Fernández MG; Sánchez-Redondo MD; Cernada M; Couce ML
Anales de Pediatría (English Edition)
2022
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.anpede.2021.10.003" target="_blank" rel="noreferrer noopener">10.1016/j.anpede.2021.10.003</a>
Having Therapeutic Conversations With Fathers Grieving the Death of a Child
Child; Bereavement; Professional-Family Relations; Conversation; Father-Child Relations; Grief; Death -- In Infancy and Childhood; Fathers -- Psychosocial Factors; Support Psychosocial -- Methods
A child's death is a traumatic life experience for parents. Health-care professionals (HCPs) have sought guidance on how to intervene with grieving parents, particularly with fathers. Having therapeutic conversations is an effective way for HCPs to support grieving fathers. In our previous study, fathers identified core beliefs that influenced their experience of grief and coping. In this article, the Illness Beliefs Model was integrated with the findings to provide a framework for interventions to create open conversations, ease fathers' suffering, and thereby help their spouse and family suffering as well. This article will guide HCPs to engage in therapeutic conversations to support bereaved fathers.
Martinez AM; Castiglione S; Dupuis F; Legault A; Proulx MC; Carnevale F
Omega: Journal of Death & Dying
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/10.1177/0030222819825916" target="_blank" rel="noreferrer noopener">10.1177/0030222819825916</a>
To Disclose or Not to Disclose: A Case Highlighting the Challenge of Conflicts in Pediatric Disclosure
Child; Humans; Bereavement; Pediatric oncology; Disclosure; Grief; End-of-life; Disclosure of information; Family caregiver
Owing to differences in opinion about patient autonomy and perceived maturity, discussing diagnosis and prognosis with children can be challenging. Shifting away from “never tell” and “always tell” approaches, recent articles have championed more nuanced case-by-case approaches to disclosure of information to children. 1234 Here we present the case of Ari (names have been changed for confidentiality), a 10-year-old female with metastatic NUT (nuclear protein of the testis) carcinoma—a rare and aggressive tumor with poor prognosis, 5 , 6 —whose medical course was complicated by parental wishes to withhold diagnostic and prognostic information from their daughter. Coupled with an interview (for an unrelated, institutional review board–approved research study) with Ari's mother 9 months after her daughter's death, the medical team's experience highlights the complexity of navigating care for families who desire to withhold medical information from their child. We use this case as an opportunity to discuss the current literature on child and young adolescent preferences for disclosure of information and highlight existing guidelines around pediatric disclosure that can help clinicians when there are disagreements about pediatric disclosure.
Martinez I; Hoppmann A; Perna S; Byrd P; Wolfe J; Aye J; Johnston EE
Journal of Pain and Symptom Management
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.jpainsymman.2020.07.042" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.07.042</a>
Grief and Bereavement in Fathers After the Death of a Child: A Systematic Review
systematic review; hospice and palliative medicine; bereavement; father grief
CONTEXT: The death of a child is devastating, and complicated grief adversely impacts parental physical and psychosocial well-being. Most research currently is centered on bereaved mothers, and the experiences of fathers remains underexplored. OBJECTIVE: We systematically reviewed the literature to characterize the grief and bereavement experiences of fathers after the death of a child. DATA SOURCES: We searched Medline, PsycInfo, Embase, and Cumulative Index to Nursing and Allied Health Literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. STUDY SELECTION: Inclusion criteria encompassed English language articles published between 2007 and 2019 that evaluated the grief and bereavement experiences of fathers after the death of their child. We excluded studies describing paternal bereavement after the death of a child aged older than 21 years, stillbirth, miscarriage, or studies that did not specify age of death. DATA EXTRACTION: Extracted domains included study design, demographics, findings, and quality assessment. RESULTS: We screened 1848 deduplicated titles and abstracts and 139 full articles, yielding 21 articles for inclusion in this analysis. Fathers often avoided discussing their grief with others, returned to work earlier, and used goal-oriented tasks as coping strategies. Intense grief reactions and posttraumatic psychological sequelae diminished over time in mothers yet persisted in fathers. LIMITATIONS: Included studies were primarily descriptive in nature, without ability to ascertain causality. Limited paternal data exists in the literature compared with maternal data. CONCLUSIONS: Despite evolving gender roles, many fathers navigate loss through stoicism, self-isolation, and hard work. For some fathers, these coping mechanisms may be inadequate for navigating grief.
McNeil MJ; Baker JN; Snyder I; Rosenberg AR; Kaye EC
Pediatrics
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/10.1542/peds.2020-040386" target="_blank" rel="noreferrer noopener">10.1542/peds.2020-040386</a>
Mapping Hospital-Based Lactation Care Provided to Bereaved Mothers: A Basis for Quality Improvement
infant death; stillbirth; bereavement; lactation; biopsychosocial approach; care pathways
Objective: The study aimed to identify and map the factors that shape the delivery of hospital-based lactation care for bereaved mothers to inform quality improvement initiatives targeting hospital-based lactation care. Methods: Focus groups and interviews were conducted at three large hospitals in Australia with 113 health professionals including obstetricians, neonatologists, midwives, neonatal nurses, lactation consultants, social workers or pastoral care workers, Human Milk Bank (HMB) staff, and perinatal bereavement nurses. Thematic and interactional data analysis identified the nature, scope, and pattern of bereavement lactation care. Results: A bereaved lactation care pathway was generated from health professionals' reports. Bereaved lactation care, if provided, was limited to brief encounters aimed at facilitating lactation suppression. The type of lactation care offered, and any exploration of the variable biopsychosocial significance of lactation after infant death, was conditional on (i) availability of health professionals with suitable awareness, knowledge, capacity, confidence, and comfort to discuss lactation; (ii) hospital culture and mode of suppression primarily practiced; (iii) mother's breast milk being visible to hospital staff; (iv) mother expressing interest in expanded lactation management options; (v) availability of, and eligibility to, donate to a HMB; and (vi) support beyond the hospital setting being facilitated. Conclusion: Mothers should be presented with the full array of lactation management options available after stillbirth or infant death. Inclusion of evidence-based, biopsychosocial and patient-centered approaches to lactation care is urgently required in health professionals' bereavement training and in the policies of hospitals and HMBs.
Noble-Carr D; Carroll K; Waldby C
Breastfeeding Medicine
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/10.1089/bfm.2021.0089" target="_blank" rel="noreferrer noopener">10.1089/bfm.2021.0089</a>
“Still Caring for the Family”: Condolence Expression Training for Pediatric Residents
Pediatrics; Communication; Bereavement; Education; Residency
Abstract Context: Insufficient communication from the medical team following a child's death may compound parental grief. Pediatric residents care for children who die, yet the landscape of condolence expression education within residency programs has not been studied. Objectives: The objective of this study was to evaluate pediatric residents' levels of experience and comfort with condolence expression and to assess their needs and desires for training in condolence expression. Methods: A cross-sectional, mixed methods survey was developed by palliative care clinicians in collaboration with bereaved parents. In 2020, following pilot testing, an electronic survey measuring resident experience with, comfort with, and training on condolence expression was distributed to 202 third-year pediatric residents across 17 ACGME-accredited programs representing varying sizes and geographic regions. Results: Ten percent of pediatric residents surveyed reported having training on condolence expression. Almost all residents considered condolence expression to be beneficial for bereaved families and most for clinicians, too, yet most had never formally expressed condolences in their roles as physicians: 83.1% had never written a condolence letter, 85% had never made a condolence phone call, and 90.5% had never attended a memorial event. Commonly reported barriers to condolence expression included lack of experience and training, as well as concern about upsetting families. Conclusions: Pediatric residents lack comfort with and training in condolence expression and desire education to address these gaps. These findings should inform development and investigation of educational resources and training opportunities for residents to learn and practice compassionate provision of condolences to grieving families.
Porter AS; Weaver MS; Snaman JM; Chen L; Zhaohua L; Baker JN; Kaye EC
Journal of Pain and Symptom Management
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.jpainsymman.2021.05.019" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.05.019</a>
Protective and risk factors associated with psychological distress in cancer-bereaved parents: A cross-sectional study
Bereaved families; Bereavement; Childhood cancer; Grief; Mental health problems; Resilience
Purpose Research shows that knowledge about mental health status, both protective and risk factors, is limited in cancer-bereaved parents. The study aimed to investigate (1) the extent of psychological distress in bereaved parents 2–8 years after the loss of a child to cancer compared to non-bereaved parents, and (2) psychological distress in association with resilience, the extent of having coped with the grief, time since the loss, and past psychological distress in cancer-bereaved parents. Design Retrospective, cross-sectional study. Methods A Norwegian nationwide study-specific questionnaire was completed by 162 parents who had lost a child to cancer, and 77 matched non-bereaved parents. We used the Cohort Norway-Mental Health Index and Resilience Scale for Adults to measure psychological distress and resilience, respectively. The extent of having coped with grief was also measured. Results Bereaved parents experienced significantly more symptoms of psychological distress, albeit not clinical psychological distress, compared to non-bereaved parents. The bereaved parents who have coped with their grief or had higher resilience reported lower psychological distress. Positive “Perception of self” and well “Planned future” were the strongest predictors of psychological distress in both bereaved fathers and mothers. Conclusion Both fathers and mothers experience more psychological distress symptoms 2–8 years after losing a child to cancer than non-bereaved parents. The findings also highlight the need for long-term support to bereaved parents in order to help to improve their resilience and to better cope with their grief.
Rasouli O; Aarseth BM; Reinfjell T; Moksnes UK; Eilertsen MEB
European Journal of Oncology 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.ejon.2021.101929" target="_blank" rel="noreferrer noopener">10.1016/j.ejon.2021.101929</a>
Current Grief Support in Pediatric Palliative Care
bereavement; death; grief; hospice; hospital; palliative; pediatric; programing; support; thanatology
Grief support changes as more is learned from current grief theory and research. The authors provide a comprehensive overview of current grief support as it relates to Pediatric Palliative Care (PPC). The following aspects of grief are addressed: (1) anticipatory grief: the nondeath losses that occur with a complex and chronic illness, as well as the time leading up to death; (2) grief around the time of death: the intense and sacred experience of companioning with a dying child; (3) grief after death: supporting bereavement and mourning through programing and other methods; (4) innovative approaches: the future of grief support. The contents of this article are meant to support and educate programs currently providing grief services and those aiming to begin the meaningful work of grief support.
Schuelke T; Crawford C; Kentor R; Eppelheimer H; Chipriano C; Springmeyer K; Shukraft A; Hill M
Children
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/10.3390/children8040278" target="_blank" rel="noreferrer noopener">10.3390/children8040278</a>
Supporting Pediatric Patients and Their Families at the End of Life: Perspectives From Bereaved Parents
Academic Medical Centers; Anticipatory Guidance; Bereavement; Chi Square Test; Child; Childhood Neoplasms; Communication; Data Analysis Software; Decision Making; Descriptive Statistics; Family; Funding Source; Health Resource Utilization; Midwestern United States; Parental Attitudes – Evaluation; Patient Preference; Professional-Family Relations; Professional-Patient Relations; Psychosocial; Quality of Life; Questionnaires; Record Review; Retrospective Design; Shared; Support; Terminal Care – In Infancy and Childhood
Background: Cancer remains the leading cause of death by disease for children in the United States. It is imperative to optimize measures to support patients and families facing the end of a child's life. This study asked bereaved parents to reflect on their child's end-of-life care to identify which components of decision-making, supportive services, and communication were helpful, not helpful, or lacking. Methods: An anonymous survey about end-of-life experiences was sent to families of children treated at a single institution who died of a malignancy between 2010 and 2017. Results: Twenty-eight surveys were returned for a 30.8% response rate. Most of the bereaved parents (61%) reported a desire for shared decision-making; this was described by 52% of families at the end of their child's life. There was a statistically significant association between how well death went and whether the parental perception of actual decision-making aligned with desired decision-making (P =.002). Families did not utilize many of the supportive services that are available including psychology and psychiatry (only 22% used). Respondents felt that additional services would have been helpful. Conclusions: Health care providers should strive to participate in decision-making models that align with the preferences of the patient and family and provide excellent communication. Additional resources to support families following the death of a child should be identified for families or developed and funded if a gap in available services is identified.
Sedig LK; Spruit JL; Paul TK; Cousino MK; McCaffery H; Pituch K; Hutchinson R
American Journal of Hospice & Palliative Medicine
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/10.1177/1049909120922973" target="_blank" rel="noreferrer noopener">10.1177/1049909120922973</a>
The Effect of Theraplay on Prolonged Grief and Post-Traumatic Stress Disorder in Bereaved Siblings of Children with Cancer: A Preliminary Study
pediatric; grief; Stress Disorders Post-Traumatic; bereavement; siblings
Background: Death of any of siblings is an overwhelming, severe, and prolonged challenge in children development process and is a major risk factor for psychiatric disorders in childhood and later. Interventions for bereaved families following a child’s death have been examined over the last several decades. However, no effective treatment for bereavement siblings prolonged grief disorder (PGD) and post-traumatic stress disorder (PTSD) has been found yet. Objectives: The study aimed at determining the effect of Theraplay on the symptoms of prolonged grief (PG) and post-traumatic stress disorder (PTSD) in siblings of a deceased child with cancer. Methods: In this preliminary study, a multiple baseline single-subject design with a follow-up period was used. The statistical population included siblings and mothers of children aged 6-10 years who had been under treatment at Mahak Child Cancer Hospital and died 1or 2 years ago. From this population, 4 mother-child pairs were selected as the study sample by convenience sampling. Each mother-child pair participated in 15 Theraplay sessions once a week (45-minute section). Assessments were performed using the inventory of prolonged grief for children (IPG-C) and the University of California at Los Angeles Posttraumatic Stress disorder reaction index for DSM-5 (UCLA PTSD-RI) at baseline, intervention sessions and follow-up stages. Visual analysis of graphic displays of level, reliable change index (RCI) and clinical significance were used to analyze the data. Data analysis and drawing graphs were performed in Microsoft Excel 2016. Results: Results of visual and quantitative analysis of data showed that PG symptoms decreased in all 4 participants during the treatment and follow-up. Also, according to the results, Theraplay intervention significantly reduced PTSD in all participants. Conclusions: Theraplay appears to be effective in reducing PG and PTSD in bereaved siblings. However, the reduction rate varied in different subjects. According to the findings, Theraplay helped subjects accept grief and loss and this method can be used to help the mental health of other bereaved children.
Sepehrtaj A; Younesi S; Mousavi P; Jafari P
International Journal of Cancer Management
2020
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<a href="http://doi.org/10.5812/ijcm.105992" target="_blank" rel="noreferrer noopener">10.5812/ijcm.105992</a>
Parental experience of child death in the paediatric intensive care unit: A scoping review
bereavement; parent perspectives; pediatric intensive care unit; scoping review; support
Objective The purpose of this scoping review was to identify the experiences of parents who endured the death of their child in the paediatric intensive care unit (PICU) and what end-of-life care they perceived as supportive. Design Scoping review using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidance. Data sources Four databases, PubMed, Embase, CINAHL and PsycINFO, were searched for studies published until 24 August 2021, with no limitation on the year of publication. Eligibility criteria We identified qualitative studies published in English that focused on parents' experiences during the death of their child in the PICU and excluded studies conducted in non-PICU settings, such as neonatal intensive care units and emergency departments. Data extraction and synthesis A five-step methodological approach ( identifying the research question', searching for relevant studies', selecting studies', charting the data' and collating, summarising and reporting the results') developed by Arksey and O'Malley was used to chart the purpose and methods of the study and the characteristics of the study participants. The extracted parental experiences were inductively summarised. Results Of 435 articles, 14 studies conducted in seven countries were included in the final review. The background regarding the child's condition varied, including whether it was acute or chronic, and the length of stay in the PICU. Parents needed effective interaction with healthcare providers to fulfil their parental role and be involved in critical decision-making regarding their child's treatment in a rapidly evolving situation. The themes inductively extracted were parental suffering', roles and responsibilities of parents', information sharing', and support of parents by healthcare providers'. Conclusions Although parent-healthcare provider interactions influence parents' experiences with their dying children in the PICU, by affecting parental roles and level of involvement, there is a lack of research focusing on improving these interactions. Copyright © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
Tezuka S; Kobayashi K
BMJ Open
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/10.1136/bmjopen-2021-057489" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2021-057489</a>
Insight into the content of and experiences with follow-up conversations with bereaved parents in paediatrics: A systematic review
follow-up; end-of-life; paediatrics; parents; bereavement
AIM: A follow-up conversation with bereaved parents is a relatively well-established intervention in paediatric clinical practice. Yet, the content and value of these conversations remain unclear. This review aims to provide insight into the content of follow-up conversations between bereaved parents and regular healthcare professionals (HCPs) in paediatrics and how parents and HCPs experience these conversations. METHODS: Systematic literature review using the methods PALETTE and PRISMA. The search was conducted in PubMed and CINAHL on 3 February 2021. The results were extracted and integrated using thematic analysis. RESULTS: Ten articles were included. This review revealed that follow-up conversations are built around three key elements: (1) gaining information, (2) receiving emotional support and (3) facilitating parents to provide feedback. In addition, this review showed that the vast majority of parents and HCPs experienced follow-up conversations as meaningful and beneficial for several reasons. CONCLUSION: An understanding of what parents and HCPs value in follow-up conversations aids HCPs in conducting follow-up conversations and improves care for bereaved parents by enhancing the HCPs' understanding of parental needs.
van Kempen MM; Kochen EM; Kars MC
Acta Paediatrica
2022
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/10.1111/apa.16248" target="_blank" rel="noreferrer noopener">10.1111/apa.16248</a>
Parental bereavement - impact of death of neonates and children under 12 years on personhood of parents: a systematic scoping review
Infant; Bereavement; Parents; End of life; Personhood; Paediatrics; Palliative care; Death; Neonate; Ring theory of personhood
BACKGROUND: Losing a child tragically impacts the well-being and functioning of parents. With these effects extending beyond emotional, physical morbidity and compromising self-perceptions, appropriate, longitudinal, timely and personalised support is key to effective care of bereaved parents. However, in the absence of a comprehensive understanding of parental bereavement, effective support of bereaved parents remains suboptimal. To address this gap, we scrutinise prevailing data on the effects of a child's death, aged 0-12 years, through the lens of the Ring Theory of Personhood (RToP). METHODS: To study prevailing accounts of bereaved parents following the death of a child, we adopt Krishna's Systematic Evidence Based Approach (SEBA) to structure our Systematic Scoping Review (SSR in SEBA). RESULTS: Three thousand seventy-four abstracts were reviewed, 160 full text articles were evaluated, and 111 articles were included and analysed using thematic and content analysis. Four themes/categories were identified relating to the four rings of the RToP. Findings reveal that static concepts of protective and risk factors for grief are misplaced and that the support of healthcare professionals is key to assisting bereaved parents. CONCLUSION: In the absence of consistent support of bereaved parents, this study highlights the need for effective training of healthcare professionals, beginning with an appreciation that every aspect of an individual parent's personhood is impacted by the loss of their child. Acknowledging grief as a complex, evolving and personalised process subjected to parental characteristics, settings, context and available support, this SSR in SEBA calls attention to effective nurturing of the relationship between parents and healthcare professionals, and suggests use of the RToP to assess and direct personalised, timely, specific support of parents in evolving conditions. We believe the findings of this review also call for further studies to support healthcare professionals as they journey with bereaved parents.
Vig PS; Lim JY; Lee RWL; Huang H; Tan XH; Lim WQ; Lim MBXY; Lee ASI; Chiam M; Lim C; Baral VR; Krishna LKR
BMC 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/10.1186/s12904-021-00831-1" target="_blank" rel="noreferrer noopener">10.1186/s12904-021-00831-1</a>
Actual Solidarity through Virtual Support: A Pilot Descriptive Study of an Online Support Group for Bereaved Parents
communication; pediatric palliative care; bereavement; telehealth
Background: Hospital-based support for bereaved parents is regarded as best practice. Little is known about parental perceptions or programmatic potential of online grief support. Objectives: To learn from bereaved parent participants' experiences with an online support group to include perceptions of technology acceptance and group communication dynamics. Design: Descriptive study reporting on an eight-week online bereavement support group offered during summer 2020. Subjects and Setting: Inclusive of six bereaved parent participants in the Midwestern United States. Measurements: Post-intervention survey consisting of 49-items with the Technology Acceptance Model and Other Communicated Perspective-Taking Ability instruments embedded. Results: Five bereaved mothers and one father (mean age 32 years) residing an average 126 miles from hospital participated in an online support group in a timeframe seven months to one year from the death of their child. Intensity of grief emotion (5/6 parents) and physical distance (4/6 parents) were notable barriers to in-person visits to the hospital, where bereavement support was to be offered. Parents uniformly reported feeling benefit from the program and satisfaction with the program. Respondents self-reported gaining improved communication (4/6 parents), coping (3/6 parents), peer support (3/6 parents), education (3/6 parents), and emotional expression (3/6 parents). Mean scores on the technology acceptance and communication experiences scales were 4.7/5. The virtual format was an acceptable modality with perceived supportive interpersonal communication dynamics. Conclusion: Pediatric palliative care teams may consider the offering of online bereavement support groups. Further research is warranted on the impact and outcomes of online bereavement support groups for bereaved parents.
Weaver MS; Jurgens A; Neumann ML; Schalley SM; Kellas JK; Navaneethan H; Tullis J
Journal of Palliative Medicine
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/10.1089/jpm.2020.0617" target="_blank" rel="noreferrer noopener">10.1089/jpm.2020.0617</a>
Advances in pediatric psychooncology
child; human; palliative therapy; adult; childhood cancer; review; young adult; sibling; attention; distress syndrome; outcome assessment; cancer patient; infant; psychosocial care; bereavement; cancer center; psycho-oncology; survivorship; patient reported outcome; chimeric antigen receptor T-cell immunotherapy; evidence based practice center; hereditary tumor syndrome; toddler
Purpose of reviewThis article reviews the current literature on psychosocial care of children with cancer with particular focus on evidence-based standards of care, including developments in systematic distress screening, utilization of patient-reported outcomes, evidence-based interventions, survivorship, palliative care and bereavement.Recent findingsAlthough attention to the psychosocial needs of the child and family is increasingly recognized as an essential element of care for children with cancer, implementing evidence-based care remains suboptimal. Recent efforts have focused on utilizing technology to improve the reach of these interventions and to enhance engagement with special populations, such as adolescents and young adults. Increasing data elucidate the long-term psychological and physical late effects of childhood cancer survivorship and the impact of cancer on siblings and the family. Gaps in clinical care and important directions for future research include the needs of infants and toddlers, overlooked minorities, and patients with hereditary tumor predisposition syndromes, and attention to the psychosocial impact of exciting new treatments, such as autologous chimeric antigen receptor (CAR) T-cell therapy.SummaryThe evidence base for the psychosocial standards of care for children with cancer and their families continues to grow, but more work is needed to successfully implement these standards across pediatric cancer centers.
Wiener L; Devine K A; Thompson A L
Current Opinion in Pediatrics
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/10.1097/MOP.0000000000000851" target="_blank" rel="noreferrer noopener">10.1097/MOP.0000000000000851</a>
Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents
newborn; social support; child; human; adult; female; major clinical study; male; retrospective study; article; priority journal; aged; Bereavement; adolescent; terminal care; quality of life; emotion; Parent; psychologist; social worker; content analysis; interpersonal communication; quantitative analysis; time of death; infant; caregiver; pediatric patient; nurse; support group; thematic analysis; psycho-oncology; open ended questionnaire; childhood cancer/dm [Disease Management]; pediatric oncologist; health care need; social media; worker
Background: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents.
Wiener L; Tager J; Mack J; Battles H; Bedoya S Z; Gerhardt C A
Pediatric Blood and Cancer
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/10.1002/pbc.27993" target="_blank" rel="noreferrer noopener">10.1002/pbc.27993</a>
Training in Expression of Authentic Condolences in Healthcare: A Pilot Study
Humans;Child; Pilot Projects; Internship and Residency; Curriculum; Communication; Delivery of Health Care; Bereavement; condolence; Education; pediatrics; resident
Background: Bereaved parents value receiving support from their children's health care teams. Pediatric residents are important members of the teams that care for children at end of life and can play a meaningful role in communication with bereaved families. Yet formal training in expressing condolences is currently lacking. Methods: We applied Kern's six step approach to develop, implement, and evaluate an innovative curriculum aimed at increasing pediatric residents' comfort levels with and practice of condolence expression. Results: Twelve residents participated in the pilot study. Quantitative and qualitative data demonstrate that residents' comfort levels with expressing condolences increased after implementation of the curriculum and that residents appreciated and benefitted from receiving this education. Conclusion: We successfully developed and piloted a condolence expression curriculum that was well received by pediatric residents and led to increased comfort level with expressing condolences. Research is ongoing to determine the full impact of this curriculum.
Aglio T; Porter A; Bien K; Clark L; Hashmi S; Kaye EC
Journal of Palliative Medicine
2022
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/jpm.2022.0181" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0181</a>
Bereavement support effectiveness for parents of infants and children: a systematic review
bereavement; child death; grief; neonates
OBJECTIVES: This systematic review aims to assess the effectiveness of bereavement support interventions (BSIs) for parents of an infant or a child who has died from a medical condition or in unforeseen circumstances. METHODS: A systematic search of MEDLINE, PsycINFO, Embase and CINAHL (1980 to January 2018) was performed to identify studies investigating BSIs for the parents of children who died between the ages of 24 weeks gestation and 30 years. Due to significant clinical and methodological heterogeneity between studies, a narrative synthesis was performed. RESULTS: The database searches returned 24 550 records, with a further 6 identified through other sources. Of these, eight studies, reported in nine papers, met the inclusion criteria. Most studies were conducted in the USA (n=5) and in perinatal/neonatal deaths (n=6). Five of the included studies were randomised controlled trials and three were non-randomised comparative studies. Interventions were delivered to groups, individuals or families. Outcomes of interest were grief, mental health, physical health and 'others'. There were major concerns over the quality of study methods and reporting. Only three of the nine studies reported a significant difference between experimental and control arm participants in any outcomes, despite a total of 23 outcomes being measured. CONCLUSIONS: Poor methodology and reporting of the few studies which have assessed BSIs for parents limit any conclusions on their effectiveness. Agreement on core outcomes and more robust study methodology are required in this neglected area of research.
Ainscough T; Fraser L; Taylor J; Beresford B; Booth A
BMJ Supportive and Palliative Care
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/10.1136/bmjspcare-2019-001823" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-001823</a>