Storytelling to support legacy making for bereaved parents of children with cancer.

Honoring a child's legacy is an essential aspect of meaning-making for bereaved parents, yet little is known about storytelling as a mechanism. Through narrative analysis of 19 bereaved parent interviews focused on legacy, we examined the role of storytelling in creating and sustaining legacy. Most participants (89%) told stories centered around the child's impact and parent's coping, including the child's character and interpersonal relationships during and after their lifetime as well as how the child's legacy influenced parents' grief experiences. Future research is needed to explore the potential impact of storytelling initiatives to support legacy-making for bereaved caregivers.

Bereaved parents' perceptions of memory making: a qualitative meta-synthesis.

OBJECTIVE: This study aims to investigate the experiences of parents who have experienced bereavement in their efforts to preserve memories of their deceased child. METHODS: Employing a qualitative meta-synthesis approach, this study systematically sought relevant qualitative literature by conducting searches across various electronic databases, including PubMed, Embase, CINAHL, PsycINFO, Web of Science, Cochrane Library, and Wiley, up until July 2023. RESULTS: Nine studies are eligible for inclusion and included in the meta-synthesis. Three overarching categories are identified: (1) Affirming the Significance of Memory Making. (2) Best Practices in Memory Making. (3) Barriers to Effective Memory Making. CONCLUSION: Bereaved parents highly value the act of creating lasting memories, emphasizing its profound significance. While forming these memories, it is imperative to offer family-centered care and honor diverse preferences and needs. It is essential to offer effective support to parents, offering them a range of choices. Furthermore, a more comprehensive examination of memory-making practices is required to better understand their influence on parents' recollections of their deceased child.

Forming our grief rhythm: The relational window of tolerance for bereaved parents.

The shared loss of a child can present challenges to couple relationships as both partners attempt to cope with their own grief and their partner's grief. In this longitudinal qualitative study, five bereaved parent couples participated in 13 total interviews, revealing coregulatory interactions surrounding their shared loss. Using thematic coding and grounded theory analysis, their reflections were organized into three interrelated process themes: regulating self, regulating other, and forming our grief rhythm. This article explores the complexity of the last theme "forming our grief rhythm" in-depth, and a new theoretical orientation, the relational window of tolerance, is introduced to examine how couples coregulate both fragile and stable states within their shared grief. The reflections of bereaved parents indicated that prolonged "dual fragile states" and prolonged "imbalanced states" may hinder relationship quality. In order to regain relationship stability, couples learned to trade off supporting one another and/or to resonate with one another in their shared pain. Implications for future research and clinical practice are discussed, focusing especially on how to integrate individual and relational needs into grief therapy frameworks.

Contributing Factors of a Good Death for Children With Cancer From Bereaved Parents' Perspectives in South Korea.

Achieving a good-quality death for children with cancer is as paramount as saving their life, given its implications for both the children's end-of-life quality and the grief journey of their parents. This study explored factors contributing to a good death for children with cancer, as perceived by bereaved parents in South Korea. A retrospective survey was conducted, involving 58 bereaved parents of a child who died of cancer. t-tests and regressions were performed to identify factors related to deceased children associated with parents' reports of a good death for children with cancer. The results revealed significant correlations between parents' age, income, religious affiliation, time elapsed since death, child's age at death, and cancer recurrence with several aspects of a good death. These findings underscore the importance of assessing characteristics of both parents and their children to enhance the quality of death experienced by children with cancer in South Korea.

Bereaved parents involvement in maternity hospital perinatal death review processes: 'Nobody even thought to ask us anything'.

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.

Long-term psychological consequences of parental bereavement prior to midlife: volunteering helps.

OBJECTIVES: Losing a child prior to midlife may be a uniquely traumatic event that continues to compromise parents' well-being in later life. This study compared psychological well-being between bereaved and non-bereaved parents, and examined whether volunteering protects bereaved parents. Because most families have more than one child, we further explored whether the number of living children parents had differentiated bereaved parents in their well-being. METHODS: We analyzed a pooled sample of parents aged 50+ (N = 12,023) from the Health and Retirement Study (2010/2012-2012/2014), including parents who lost a child prior to 50 and those who never lost a child. Two-level linear regression models were estimated to test the associations between child loss, volunteering, and psychological well-being, and examine the moderating effect of number of living children. RESULTS: Bereaved parents reported more depressive symptoms and lower life satisfaction than their non-bereaved counterparts, which was more evident among parents with fewer children alive. Among bereaved parents, volunteering, particularly volunteering 100+ hours/year, was associated with better psychological well-being at baseline; yet, volunteering 1-99 hours/year led to a larger increase in life satisfaction over time. The benefits of volunteering held true regardless of the number of living children. CONCLUSION: This study adds to our understanding of the lasting effect of parental bereavement and suggests volunteering as a potential intervention aimed at helping bereaved older parents. Findings identify parents with fewer children as a particularly vulnerable population in the face of child loss and calls for more resources allocated to help them.

Grieving in community: Accompanying bereaved parents.

This study explored relational grieving in community by examining how community members grieve with bereaved parents after the death of a child. Three bereaved parent couples and their community members were interviewed together using the qualitative action-project method to examine their shared grieving actions. Data was analyzed through top-down and bottom-up processes to understand the shared intentions of their grieving actions together. The findings of this research elicited thick descriptions of relational grieving at a community level. Four main assertions of how communities grieve with bereaved parents emerged, and include: (a) selflessly offering emotional and practical support, (b) engaging in and honouring vulnerability, (c) holding the complexity of grieving, and (d) fostering remembrance of the deceased child together. The novel descriptions of relational grieving in community contributed to the growing area of relational bereavement research. The theoretical, empirical, and clinical implications of this study are discussed.

When a Child Dies by Suicide: An Interpretative Phenomenological Analysis Study.

Suicide is a global concern for the well-being of families. When parents experience their child's death by suicide, their well-being can be substantially impaired. This study aimed to explore the lived experiences of parents whose children died by suicide. Data were collected from 25 mothers through interviews between 2019 and 2021 and analyzed using interpretive phenomenological analysis. The data revealed five superordinate themes, including (1) who am I; (2) the unrelenting questions; (3) my existence on earth is brutal and cruel; (4) grief; and (5) the meaning. Each superordinate theme includes two to four supporting clusters. Parents' grief associated with a child's suicide is overwhelming and paralyzing but is often a journey to find the meaning or the reason for the death. Parents are traumatized and emotionally vulnerable. Healthcare providers need to support parents who lose their children to death by suicide.

When young children grieve: Supporting daycare children following bereavement-A parent's perspective.

Thirteen parents who lost the mother or father to their child were interviewed, using semi-structured interviews. Participants reflect on their young children's (3-6) grief, support needs, and what they learned from this trying time. The event scarred all participants. While some moved on, others were still struggling years after. The study uncovers difficulties associated with informing a young child, with a limfited understanding of illness and loss, in a life-situation where parents themselves are clinging to hope. While support is available from daycare, it can be better organised and structured. Proactive support that assists the child through illness and death relieves the parental care burden.

Complicated Grief Following the Traumatic Loss of a Child: A Systematic Review.

Complicated grief is a disabling condition that occurs when the natural grief process is disturbed or prolonged. Research demonstrates that complicated grief is more prevalent following the sudden or violent loss of a child. Despite the high incidence of accidental death worldwide, little research has focused on parental grief trajectories following this form of traumatic loss. A systematic review was conducted to explore parental bereavement outcomes following accidental death. Studies were included if they specifically examined complicated grief in parents bereaved by the accidental death of their child. A total of 767 articles were identified and seven studies met the eligibility criteria for review. Poorer outcomes were identified in relation to the mode of death, relationship type, time post-loss, perceived support, perceived justice and comorbidities. Results of the current study may be used to inform the development of clinical practice guidelines for the treatment of complicated grief.

The Effectiveness of a Forgiveness Intervention on Mental Health in Bereaved Parents-A Pilot Study.

The aim of this pilot study was to test the effectiveness of an educational forgiveness intervention on mental health in grieving parents. 21 grieving parents were randomly assigned to the experimental group (in which the educational forgiveness intervention occurred) and to the control group (in which a psycho-education grief intervention with a humanistic approach took place). Participants in both groups completed 12 individual hourly sessions for three months. The results showed that participants in the experimental group achieved statistically greater improvement in forgiveness towards others, self-forgiveness, and a greater decrease in depression in the post-test and follow-up test; a greater decrease in anxiety and anger in the post-test; as well as higher improvement in the post-traumatic growth in the follow-up test, four months after the end of the intervention. We highlight the potential benefits of using a forgiveness intervention with bereaved parents.

The Relationship Between Perceived Parental Competence and Bereavement Outcomes in Widows With Young Children.

Adjustment to bereavement, while a normative life experience, is one that impacts every aspect of life. Widows with young children face the unique challenge of managing both their grief and the grief of their child while also redefining roles, responsibilities, and resources. This study used a cross-sectional survey method to explore the relationship between perceived parental competence and bereavement outcomes in widows with young children (n = 232). Participants completed study measures including a demographic survey, the Revised Grief Experience Inventory, and the Parental Sense of Competence Scale. Results indicate that the constructs of competence, parenting self-efficacy and parental satisfaction, were directly correlated to decreased grief experiences. Additionally, grief experiences were found to be higher in widows reporting lower levels of education, those who were not currently in a relationship, and those who had more children to care for. This study highlights the potential that perceived parental competence has to influence the grief experience for widows and their bereaved children.

Fathers' Relational Experiences of Stillbirth: Pre-natal Attachment, Loss and Continuing Bonds Through Use of Objects.

This study aimed to investigate fathers' lived experiences of stillbirth through the lens of continuing bonds and use of objects. Semi-structured interviews were conducted with six fathers who had experienced stillbirth from 20 weeks gestation. Interpretative phenomenological analysis revealed five themes: loss and continued bonds in a mother-mediated dynamic, objects as manifestations of relational and meaningful memories, exerting existence and continued connection to others, continued bond through physical presence and evolving expressions of love and fatherhood. Findings offer a novel understanding of the relationship between objects and continued bonds, where objects are seen to facilitate this bond through varying means, including physical manifestation of the deceased and representation of the father-infant relationship. The study places importance on fathers' involvement in creating objects permeated with meaning and memories, and of validating fathers' experiences of loss rather than considering these men merely as partners of a mother who lost their own baby.

A therapist-supported internet-based intervention for bereaved siblings: A randomized controlled trial.

BACKGROUND: The loss of a sibling can have a long-term impact on the mental and physical health of the surviving sibling throughout adolescence and later adulthood. Even though bereaved siblings can be identified as a high-risk group, evidence-based interventions for this bereavement group are still missing. AIM: To evaluate the treatment effects of an internet-based writing intervention for bereaved siblings aged 16-65 years. DESIGN: A two-armed randomized controlled trial (DRKS00011514) compared the intervention to a waiting list control group. The 6-week intervention consisted of six structured writing assignments that were based on cognitive behavioral therapy, focusing on the specific situation of bereaved siblings. SETTING/PARTICIPANTS: Eighty-six bereaved siblings (loss >1 month ago, no severe psychiatric symptoms) were randomly allocated to the intervention group (n = 47) or the waiting list control group (n = 39). Primary outcomes were symptoms of prolonged grief disorder and depression; secondary outcomes were posttraumatic stress symptoms and survivor guilt. RESULTS: Symptoms of depression and prolonged grief disorder improved significantly in the intention-to-treat analyses from pre-to post-measurement compared with the control group (gDepression = -0.62, gGrief = 0.33). In the intervention group, all primary and secondary outcomes decreased significantly from baseline to 12-month follow-up (gs = -0.38 to -1.04). A significant clinical change could be found for depression (34%) compared to the waitlist control group (10%). CONCLUSIONS: Bereaved siblings profited from this brief internet-based writing intervention in the short- and long-term. However, future research, such as dismantling studies, may help to further optimize the benefits of an intervention aimed at bereaved siblings.

Comparative Analysis of the Psychosocial Symptoms and Experiences of Bereaved Parents and Parents of Children Who Survived the Sewol Ferry Accident After 5 Years: A Qualitative Interview Study.

BACKGROUND: This study aimed to investigate the psychosocial symptoms and experiences of bereaved parents of victims and parents of survivors of the Sewol Ferry accident five years after the accident. METHODS: In-depth interviews of 186 bereaved parents of victims or survivors of the Sewol Ferry accident were conducted. We elicited and categorized meaning units relevant to the psychological, cognitive, and physical traits of the participants from these interviews. Differences in responses between bereaved parents and survivors' parents and between genders were examined using frequency analyses and χ² tests. RESULTS: Data were organized under seven headings: observed attitude and impression of participants, difficulties due to mental health problems, difficulties due to physical pain, difficulties in relationships, negative changes following the incident, positive changes following the incident, and help needed. Within these headings, 27 themes, 60 sub-themes, and 80 meaning units were elicited. CONCLUSION: This study explored the psychiatric, physical, and relational problems reported by bereaved parents and those of survivors as well as major changes in their personal and social lives after the Sewol Ferry accident. Differences in responses according to gender were also identified. The results from this study could inform and facilitate the implementation of intervention measures, such as long-term psychological evaluation, to bereaved parents of victims or survivors of disasters.

Grief Trajectories of Bereaved Parents of Adolescents and Young Adults With Advanced Cancer: A Qualitative Analysis Using Phenomenology.

Different parents grieve differently. However, research directed at understanding the important contextual or individual factors that influence the path each bereaved parent takes is lacking. In this qualitative analysis we seek to understand the array of bereaved parent experiences more completely. By deeply diving into one parent dyad using interpretive phenomenology analysis and situating that story within the conventional content analysis of 13 other bereaved parents of adolescents and young adults (AYAs) who died from advanced cancer, we illustrate the roles of religion/spirituality, maintaining a connection, and fulfilling parental roles as elements of grief processing. Clinicians and investigators should consider similar individualized approaches to understanding and supporting the grief experiences of bereaved parents before and after the death of a child.

A Longitudinal Perspective on Bereaved Parent's Changes in Life Experience after the 2014 Sewol Ferry Sinking.

This study compared reports of parental life experiences from bereaved parents at two and five years after the death of their adolescent children due to the sinking of the Sewol Ferry in South Korea. Twelve bereaved parents (eight mothers and four fathers from eight families) were interviewed regarding the changes and stabilities they experienced over time at two time points of data collection. Twenty-eight in-depth interviews were transcribed verbatim and analyzed using qualitative content analysis. Outcomes of parental bereavement and changes in life over time may be classified into four main categories: (a) personal changes, (b) changes in perspectives, (c) changes in family relationship, and (d) changes in social relationship and work attitude. This study includes a detailed examination of the phenomenon among the bereaved parents. Discussions and implications are provided based on the results.

A Portrait of Self-Reported Health and Distress in Parents Whose Child Died of Cancer.

Grieving a child following cancer is a substantially difficult task. The objectives of this research were: 1) to describe current quality of life (QoL), psychological distress and symptoms of grief of bereaved parents, and 2) to explore the role of possible contributors of QoL and psychological distress. Forty-six parents (32 mothers) of children who died of cancer were surveyed on their QoL, distress, and complicated grief. Data were analyzed using multiple linear regression. Parents had a high frequency of grieving symptoms (58%). Mothers reported more retrospective grief symptoms than fathers when describing the year after child death. Current lower mental well-being was associated with experiencing higher retrospective grief symptoms, a shorter period since child death, and being a father. Hence, parents experienced disturbances even long after child death. Mothers and fathers may present specificities that should be considered when developing supportive activities for this vulnerable population.

How Bereaved Parents Experience Public, Self Stigma Years After a Child's Death.

This study identifies the stigma experienced by 12 bereaved parents 2 and 5 years after losing a child in the Sewol ferry disaster in South Korea. Using thematic analysis, we categorized the experience of stigma into two components based on Corrigan and Kosyluk's social cognitive model of stigma: public stigma and self-stigma, and each was analyzed into three types of stigma: stereotype, prejudice, and discrimination. We identified four additional factors related to stigma mitigation. The potential implications for characterizing the experiences of bereaved parents, particularly those facing stigma, are discussed in light of these findings in the longitudinal perspective.

Advice from Bereaved Parents on Strategies to Heal After Baby Loss.

With close to one in three babies dying between conception and infancy, research examining how to assist bereaved parents after loss is critical. Prior research focuses primarily on a general understanding of the journey post-loss or on a specific strategy that can be pursued to assist in healing but does not adequately provide a holistic examination of post-loss strategies nor is it from firsthand recommendations of bereaved parents. Our research addresses this gap in the literature by identifying the post-loss healing strategies recommended by bereaved parents themselves, thereby informing coping post-loss. To do this, 30 semi-structured interviews were conducted with bereaved mothers. Four themes emerged from our findings: (1) honor the deceased baby, (2) engage in helpful practices, (3) pursue healing now, and (4) embrace the post-loss journey as unique.