Analysis of in-depth qualitative interviews with 20 bereaved parents and 11 service providers revealed a more holistic conceptualization of the bereavement process for parents who have lost a child. Holistic ?states? included: ?helplessness prior to the death,? ?fog,? ?turmoil,? ?transition,? ?new beginnings,? and ?stability.? Findings showed that loss and restorative processes are characteristic of more than one state, the bereavement narrative starts prior to the death, there is often a downturn after the bereaved parent seemingly is doing better, and the process never ends but may include a continuing bond with the deceased and reoccurring moments of extreme grief. Recommendations for direct practice, program development, and future research are presented.
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Abstract Introduction The death of a baby is devastating for parents, families and staff involved. Involving bereaved parents in their baby's care and in the maternity hospital perinatal death review can help parents manage their bereavement and plan for the future. In Ireland, bereaved parents generally have not been involved in this review process. The aim of our study was to assess parents' perception of how they may be appropriately involved in the maternity hospital perinatal death review in ways that benefit them and the review process itself. Methods Bereaved parents (n?=?20) in Ireland were invited to take part in semistructured interviews. Thematic analysis was carried out on the interview transcripts. Results Four main themes were identified based on the participants' views and opinions on how they experienced the review process and how they feel this process may be improved. The themes reflect the journey of the parents through the different stages of the review process: Throughout process; On leaving the hospital; Interaction with the hospital ?waiting in limbo?; Review itself. Identified subthemes highlighted essential aspects of this process and care provided to parents. For the parents, open, honest communication with staff, as well as having a key hospital contact was essential. Parents wished to provide feedback on their experience and wanted to be included in the review of their baby's death, in a way that was sensitive to their needs and the hospital's schedule. Conclusion A respectful, flexible system that allows bereaved parents' involvement in their baby's perinatal death review and is tailored to their needs is essential. A collaborative process between staff and parents can highlight clinical areas in need of change, enhance lessons learned, improve bereavement services and may prevent future perinatal deaths. Public Contribution Bereaved parents were interviewed for this study.
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INTRODUCTION: Simulations, which represent reality, are effective in pediatric healthcare communication skills education and training. Parents are increasingly engaged in simulation development, particularly for authentic character development, to help achieve greater psychological fidelity. For simulated encounters related to a child's end-of-life, involvement of bereaved parents would make sense. However, this is challenging because there is limited research to guide their inclusion and significant responsibility for any approach to be thoughtful and psychologically safe for participating parents. This study explores the impact and experiences of bereaved parents and actors who participated in simulation design. METHODS: This qualitative phenomenological study involved five bereaved parents and two actors who participated in a full-day workshop to design and develop characters for use in a simulation. Individual semistructured interviews were conducted up to four weeks after the workshop. Data collected from these telephone interviews were analyzed using inductive content analysis. RESULTS: Bereaved parents found the workshop emotionally challenging but positive, worthwhile, and beneficial. Similarly, actors found the workshop helpful in character development and, although it was an intense experience for them, it validated the importance of their work. Key elements of our research findings could inform future such activities. CONCLUSIONS: Involving bereaved parents in simulation design can be psychologically safe and beneficial for both parents and actors. Ongoing involvement of bereaved parents may lead to higher-quality simulated experiences, allowing clinicians to practice skills to enhance care provided at a child's end-of-life.
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bereavement; Palliative Care; Communication; end of life; Grief; Pediatric oncology; bereaved parent; bereavement program; cancer; health care provider
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).
This qualitative study explored bereaved parents’ and siblings’ reports of legacies created by children with advanced cancer. Participants included 40 families of children who died from cancer, with 36 mothers, 27 fathers, and 40 siblings (ages 8-18 years). Individual interviews were completed at home approximately 10.68 months (SD = 3.48) after the child’s death. Content analysis of interviews indicated that many children living with cancer did specific things to be remembered, such as making crafts for others, willing away belongings, writing letters to loved ones, and giving special gifts. Some children, particularly those who were very ill or died unexpectedly, did not intentionally do or say anything to be remembered. Legacies included bereaved individuals remembering children’s qualities, concern for family, and beliefs about afterlife. Having advanced cancer appeared to motivate children to influence others’ lives and prepare for their own deaths. Children’s advice about how to live life inspired bereaved family members. Findings contribute to the current knowledge of legacy-making in children and offer implications for practice and future research.
2009-11
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AIM: To explore bereaved parents' interactions with healthcare providers when a child dies in a paediatric intensive care unit. BACKGROUND: Though most children admitted to a paediatric intensive care unit will survive, 2-5% will die during their stay. The parents of these children interact and form relationships with numerous healthcare staff during their child's illness and death. Though previous studies have explored the parental experience of child death in intensive care generally, the nature of their relationships with healthcare providers during this time remains unknown. DESIGN: This study used a constructivist grounded theory approach. METHODS: Data were collected via semi-structured, audio-recorded interviews with 26 bereaved parents from 4 paediatric intensive care units over 18 months in 2015-2016. Constant comparative analysis and theoretical memos were used to analyse the data. FINDINGS: The theory 'Transitional togetherness' demonstrates the changing nature of the parent-healthcare provider relationship across three key phases of the parents' journey. Phase one, 'Welcoming expertise', focuses on the child's medical needs, with the healthcare provider dominant in the relationship. Phase two, 'Becoming a team', centres around the parents' need to recreate a parental role and work collaboratively with healthcare providers. Finally, 'Gradually disengaging' describes the parents' desire for the relationship to continue after the child's death as a source of support until no longer needed. CONCLUSIONS: Findings from this study offer valuable insights into the changing nature of the parent-healthcare provider relationship and highlight the key foci of the relationship at each stage of the parental journey. This article is protected by copyright. All rights reserved.
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Citation List Month
September 2017 List
Notes
Using Smart Source Parsing Jul doi: 1111/jan
]]>https://pedpalascnetlibrary.omeka.net/items/show/10601
Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with patients and families at the end of a child's life and after death profoundly affects parental grief, offering a unique opportunity for the medical community to positively impact the bereavement experience. The current study was conducted to explore the role of the health care team and medical institutions in the grief journeys of parents whose child died a cancer-related death.
METHODS:
Eleven bereaved parents participated in 2 focus groups. Responses to each of the 3 main prompts were coded and analyzed independently using semantic content analysis techniques.
RESULTS:
Four main concepts were identified within the parental narratives, including the importance of strong and ongoing relationships between providers and bereaved families, the importance of high-quality communication, the effect of negative experiences between providers and families on parental grief, and the importance of the institution's role in the grief journeys of bereaved parents.
CONCLUSIONS:
Bereaved parents consistently identified the critical role played by medical staff and medical institutions throughout the grief journey. Key components of bereavement support identified by parents should serve to guide the actions of providers as well as provide a template for the development of a comprehensive bereavement program within an institution.]]>2023-02-23T17:20:39-05:00
Title
Helping Parents Live With The Hole In Their Heart: The Role Of Health Care Providers And Institutions In The Bereaved Parents’ Grief Journeys.
Creator
Snaman J; Kaye EC; Torres C; Gibson DV; Baker J
Publisher
Cancer
Date
2016
Subject
Death; Analysis; Child; Parents; Parent And Child; Bereavement; Psychological Aspects
Bereaved Parent; Bereavement; Bereavement Program; Cancer; Communication; End Of Life; Grief; Health Care Provider; Palliative Care; Pediatric Oncology
Description
BACKGROUND:
Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with patients and families at the end of a child's life and after death profoundly affects parental grief, offering a unique opportunity for the medical community to positively impact the bereavement experience. The current study was conducted to explore the role of the health care team and medical institutions in the grief journeys of parents whose child died a cancer-related death.
METHODS:
Eleven bereaved parents participated in 2 focus groups. Responses to each of the 3 main prompts were coded and analyzed independently using semantic content analysis techniques.
RESULTS:
Four main concepts were identified within the parental narratives, including the importance of strong and ongoing relationships between providers and bereaved families, the importance of high-quality communication, the effect of negative experiences between providers and families on parental grief, and the importance of the institution's role in the grief journeys of bereaved parents.
CONCLUSIONS:
Bereaved parents consistently identified the critical role played by medical staff and medical institutions throughout the grief journey. Key components of bereavement support identified by parents should serve to guide the actions of providers as well as provide a template for the development of a comprehensive bereavement program within an institution.
Rights
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).