Search Results (31)

Background: Parental loss in childhood is a significant developmental risk factor, underscoring the need for evidence-based knowledge to guide support. Although social responses play a central role in children’s adjustment to loss, little is known about how parentally bereaved children in Israel experience social support in school. Methods: This qualitative study examined how parentally bereaved children in elementary and middle school experience social responses in the school context. Thirty-six participants were interviewed: 20 children who participated in dyadic interviews with their 16 surviving parents. Linguistic analysis, combined with Grounded Theory, was used to analyze the data. Results: Peer support was found to lie on a continuum ranging from support, through an unintentional lack of support, to deliberate nonsupport (teasing). These patterns shaped children’s experiences of returning to school, their sense of belonging, and their ability to share their grief. Conclusions: The findings, discussed in light of the Dual Process Model of Coping with Bereavement, highlight the crucial role of peers in children’s adaptation to parental loss. Developing evidence-based knowledge in this area may inform policy change and tailored school-based training to promote optimal support for parentally bereaved children. Full article

Background/objectives: High-quality pediatric critical care includes supporting children nearing the end-of-life (EOL) and their families. Cataloging existing interventions for children dying in the neonatal or pediatric intensive care unit (NICU, PICU) establishes critical areas for future research. In this scoping review, we evaluated characteristics of PICU EOL interventions. Methods: A librarian guided a search of OVID Medline, CINAHL, OVID PsycINFO, OVID Embase, Cochrane Central, and Web of Science, plus backwards and forwards reference searching. We included interprofessional interventions, defined as any systematic change (e.g., educational programs, symptom management, electronic medical record, etc.), for children dying from any cause. Studies were independently screened by two reviewers. Data were extracted by one team member and reviewed by a second. We extracted intervention elements, contextual factors, implementation barriers/facilitators, and generated frequencies from qualitative coding. Results: Of 11,643 screened articles, 44 met the inclusion criteria. Most were in neonatal ICUs (n = 28/44, 64%) and general PICUs (n = 10/44, 23%). Most interventions aimed to improve clinician knowledge (25/44, 57%), augment clinical structures and processes (n = 11/44, 25%), or enhance communication (n = 8/44, 18%). Common delivery methods included clinical practice changes (n = 25/44, 57%; e.g., protocols, order sets [n = 12]), and educational sessions (n = 20/44, 45%). Outcomes included clinician knowledge (n = 17/44, 39%), qualitative feedback (n = 18/44, 41%), feasibility/acceptability (n = 12/44, 27%), or treatment utilization (n = 11/44, 25%). Few examined families’ mental health (n = 3, 7%) or bereavement (n = 2, 5%). Few reported implementation facilitators or barriers. Conclusions: Most included studies targeted clinician outcomes through education. Designing, testing, and implementing interventions focused on family outcomes is a critical next step. Full article

Background/Objectives: Precision medicine is transforming care for children with cancer, but raises new challenges. We explored parents’, oncologists’ and scientists’ perspectives on three aspects of a precision medicine trial for poor prognosis childhood cancer: data sharing, requests for additional tumor biopsies, and confidentiality. Methods: Data were collected through PRISM-Impact, a psychosocial sub-study within the Zero Childhood Cancer Program’s PRISM trial. Parents completed questionnaires at enrolment and one year later, and an optional interview after receiving their child’s trial results. Bereaved parents completed a questionnaire six months after bereavement (T1B). Oncologists and scientists were interviewed one year following trial commencement. Quantitative data were analyzed descriptively, and qualitative data thematically. Results: Parents (n = 126) considered additional tumor biopsies acceptable when risks were low and their child or oncologist supported the request. Oncologists (n = 26) emphasized weighing risk–benefit, ensuring parents felt fully informed, and research value. Most parents supported data sharing (≥89–96%), including after bereavement, despite potential privacy concerns. Parents supported overseas and interstate testing, and scientists having access to identifiable health information. Scientists (n = 10) found working with identifiable data emotionally challenging. Conclusions: Parents, oncologists, and scientists showed high acceptance of procedural aspects of precision medicine. Future trials should address privacy concerns and ensure informed consent recognizes that parents’ high acceptability of procedures may be linked to their hopes for benefit, reinforcing the need for informed consent. Full article

Music therapy in paediatric palliative care offers a unique opportunity for emotional support, legacy creation, and therapeutic connection for children and their families. This paper describes the Heartbeats Intervention, as delivered by a paediatric palliative care music therapist at Sydney Children’s Hospital Australia. This intervention involves recording and creatively integrating the heartbeats of children and family members into personalised musical compositions. Originally inspired by music therapist Brian Schreck’s work, the intervention has evolved to meet diverse therapeutic goals, from soothing children with serious illnesses (including cancer) with recordings of their families’ heartbeats to creating legacy song tracks that support families through bereavement. Despite some logistical and resource challenges, the intervention has been well-received and continues to expand, including the integration of environmental soundscapes and broader community involvement, which allows the intervention to be experienced by a greater number of families. This paper contributes to the limited but growing literature on music therapy in paediatric palliative care, highlighting the Heartbeats Intervention as a flexible and meaningful way to enhance psychosocial support and connection for children and their families. Further research to evaluate its long-term impact and to explore children’s direct experiences of the intervention is needed. Full article

Purpose: Assess mental health professionals’ attitudes regarding the timing and characteristics of therapeutic interventions for children whose parents have incurable cancer, and whether professionals would use artificial intelligence (AI) in these interventions. Methods: Professionals were surveyed about their therapeutic approaches to caring for children when parents have incurable cancer under different scenarios. Data from N = 294 (69% male, 72% white, 26% Latine, 56% rural or underserved communities) physicians, psychologists, social workers, hospital chaplains, community health workers, and others were analyzed. Attitudes surrounding the timing and characteristics of interventions across the parent’s cancer journey were compared, including how professionals believed interventions should attend to dimensions of the child or family, and if, how, and when AI technology could be introduced. Results: Across 10 dimensions of childhood, (1) the child’s premorbid exposure to traumatic events, (2) a surviving parent’s presence, and (3) the child’s age were important factors to consider when making mental health care decisions in this context. The professionals reported being more likely to introduce therapeutic resources as early as possible in the parent’s illness (i.e., upon diagnosis). Regarding the use of AI, 87% foresaw its role in supporting children’s mental health. While 93.2% agreed that a grieving child could be helped by interacting with an AI-generated likeness of the deceased parent, when AI’s use was contextualized in providing support for a child who lost a parent to cancer, only 49% believed AI was appropriate. The participants were conflicted over when AI could be first introduced, either upon a parent’s illness diagnosis (19.4%), during a parent’s treatment (19.0%), or as part of a parent’s hospice care (12.6%). None believed it to be appropriate following the loss of the parent to cancer. Conclusions: AI is increasingly present in children’s daily lives and quickly infiltrating health care with widely accessible mental health chatbots. Concerns about privacy, the accuracy of information, and the anthropomorphism of AI tools by children give professionals pause before introducing such technology. Proceeding with great caution is urged until more is known about the impact of AI on children’s mental health, grief, and psychological well-being in the context of parental cancer. Full article

In October 2023, a Knowledge Exchange Forum was established, bringing together arts therapies staff and students from three different palliative and end-of-life care (PEoLC) settings: St Columba’s Hospice Care in Edinburgh, the Brookdale Department of Geriatrics and Palliative Medicine at Mount Sinai Hospital and the Mount Sinai Kravis Children’s Hospital in New York. Adopting a practice-led approach, the Forum offers a space to unpack questions and challenges that arts therapists face in PEoLC. In this dialogical paper, we outline the development of the Forum and share emerging insights from our cross-cultural discussions. When working in PEoLC settings, arts therapists are commonly required to work across a continuum of care. This continuum extends from individual sessions with patients, families and bereaved carers, to groups and community-oriented initiatives. It often requires a capacity to work flexibly and fluidly with regard to, for example, therapeutic boundaries, consistency of location, and time. Discussion of emerging insights leads to a consideration of their implications for education and practice, and for future directions in professional networking and knowledge exchange. Full article

The COVID-19 pandemic has exacerbated the challenges faced by children in Malaysia, particularly in terms of poverty and hardship. This has led to concerns about the long-term impact on children’s welfare, particularly in terms of educational and economic inequalities. The multidimensional nature of poverty is often overlooked in public policy discussions, and most countries use National Multidimensional Poverty Indices (MPIs) to define child poverty levels within a nation. This article aims to compare the results of a child-specific Multidimensional Poverty Index (MPI) with those of a household-specific MPI, considering the uncertainty surrounding the capacity of Household MPIs to accurately identify multidimensionally impoverished children. This study, conducted in Pahang, Malaysia, uses survey data to examine the multidimensional child poverty status and its dynamic changes. The modified child poverty headcount ratio, using the Alkire–Foster methodology, evaluates both the traditional headcount ratio of child poverty and the mean level of deprivation among disadvantaged children. The results indicate low poverty rates in Pahang and its districts. Increased policy attention has been called for due to rising unemployment among parents and the increasing number of bereaved children due to the pandemic. Full article

Background: The death of a child due to complex congenital heart disease (CCHD) in pediatric intensive care units profoundly affects families, often resulting in lasting grief and emotional distress. Despite advancements in pediatric palliative care (PPC), significant gaps persist in communication and end-of-life (EoL) planning. This study explores the experiences and perceptions of bereaved parents to identify areas for improvement in PPC delivery. Methods: A qualitative phenomenological design was used to analyze the lived experiences of 18 bereaved parents whose children died from CCHD at a tertiary cardiac center. Semi-structured telephone interviews were conducted, incorporating five open-ended questions. Data were analyzed inductively using Colaizzi’s method to identify recurring themes and subthemes. Results: Four key thematic areas emerged: communication issues, the parental role, child care, and bereavement support. Parents highlighted inconsistent communication, lack of preparedness for EoL decisions, and emotional isolation as major challenges. Positive experiences often involved compassionate healthcare providers and structured psychological support. A significant proportion of parents identified family support and faith as key coping mechanisms, while others expressed dissatisfaction with post-mortem follow-up and the absence of long-term bereavement care. Conclusions: Bereaved parents’ experiences underscore the need for improved communication strategies, greater parental involvement in care, and enhanced bereavement support. Integrating structured decision-making pathways early in the care trajectory may help mitigate parental distress and improve the quality of EoL experiences for children with CCHD. Full article

Background/Objectives: Parents who accompany their children with a complex chronic illness until their death experience a unique situation, with vulnerabilities, specific needs and enormous suffering. The aim of the study was to describe the lived experience of parents who accompanied their children with a complex chronic illness until their death, in a paediatric palliative care setting. Methods: We opted for a qualitative methodology, with a descriptive phenomenological orientation. Phenomenological interviews were carried out with nine intentionally selected mothers, with the support of a paediatric palliative care hospital team. The procedural phases of van Kaam’s method, modified by Moustakas, were used to analyse the data. Results: An understanding of the essential structure of the phenomenon is revealed in a description made up of three essential themes: ‘facing the harbinger of illness’; ‘living (together) with a sick child’; and ‘starting again without ever forgetting: living with an absent child’, the latter being the subject of this article. Conclusions: The participants attribute a self-transforming meaning to their lived experience of accompanying their children. Nurses will be able to access the lived experience of these mothers and improve their intervention in the process of their children’s illness, as well as in their bereavement process. There are also contributions to research and teaching in palliative care in the area of child and paediatric health. Full article

Parents of LGBTQIA+ individuals often report experiencing an affective state similar to grief after their children’s coming out. The current study explores whether this experience resembles that of people who have recently lost someone close. Furthermore, we tested whether the parents’ alexythimic traits are associated with their grief-like experience. In a sample of 194 parents who experienced their children’s coming out, we administered the Integration of Stressful Life Events Scale (ISLES), the Social Meaning In Life Events Scale (SMILES), and the Toronto Alexithymia Scale (TAS-20). The results showed no significant differences in the mean scores of ISLES and SMILES between the present and bereaved samples by their creators. In addition, in the present sample, lower ISLES and SMILES scores were associated with higher alexithymic traits. Overall, these findings suggest a resemblance between the experience of parents following their children’s coming out and that of bereaved individuals. Therefore, they could inform on how to assist parents in coming to terms with the coming out of an LGBTQIA+ child. Full article

Background: The COVID-19 pandemic has impacted the lives of individuals, families, and children worldwide. In Italy, the implementation of measures such as lockdowns and distance learning in schools affected the mental health of children and families. Methods: This article employs a qualitative method to explore the efficacy of a death education project that aimed to help primary school children process the emotions and losses that they experienced during the COVID-19 pandemic. The study encompassed both the children who took part in the death education project and their teachers and parents to investigate their perspectives on the emotions of the minors and the effectiveness of the project. Results: Distance learning posed challenges for the learning process and exacerbated social inequalities. The children suffered from limited social contact with their friends and experienced negative emotions, including anger, fear, and concern for the health of their loved ones. The death education project provided a safe space for children’s emotional expression and facilitated their acquisition of coping strategies. Open communication between adults and children about illness and death proved effective in mitigating the psychological impacts of loss and preventing traumatic bereavement. Conclusion: The findings highlight the utility of death education in enhancing children’s ability to express their emotions and approach the topic of death more frankly. Full article

Background: Death reporting is a delicate task. The ways in which it is carried out can have a significant impact on both the recipient and the notifier, especially in the event of a sudden, violent, and traumatic death. Empathetic, sensitive, and attentive communication with survivors can represent a first opportunity to support the bereavement process. The acquisition of specific skills for the delivery of the death notification is necessary for the professional who carries out the communication to increase self-efficacy, knowledge, and perception of competence in this area. Objective: To map what the literature has produced on the theme of best practices for the notification of unexpected, violent, and traumatic deaths and to provide guidance for the formulation of appropriate best practices and the development of effective educational programs. Methods: A review was conducted using the PRISMA Scoping Review extension on English language literature published between 1966 and 2022. Results: Starting from the initial 3781 titles, 67 articles were selected. From a thematic point of view, the analysis of the contents made it possible to identify five dimensions: (1) general guidelines in relation to various professional figures; (2) specific protocols; (3) guidelines for notifying death to children; (4) guidelines for notification of death by telephone; and (5) recommendations and suggestions for death notification training programs. Discussion: Death notification is configured as a process, divided into sequential phases. The act of notification constitutes the central phase during which communication is carried out. The communication of death is context-specific; therefore, it should require the creation of specific protocols for the various professions involved in the task, along with targeted theoretical and practical training. Conclusions: The importance of defining specific guidelines for the various professionals and standardized programs of theoretical and practical training emerges. The implementation of future sectoral studies will allow evaluations of the effectiveness of these protocols and programs. Full article

Effective communication is integral to patient and family-centered care in pediatric and adolescent and young adult (AYA) oncology and improving healthcare delivery and outcomes. There is limited knowledge about whether AYAs and parents have similar communication preferences and needs. By eliciting and comparing communication advice from AYAs and parents, we can identify salient guidance for how clinicians can better communicate. We performed secondary analysis of semi-structured interviews from 2 qualitative communication studies. In one study, 80 parents of children with cancer during treatment, survivorship, or bereavement were interviewed. In the second study, AYAs with cancer during treatment or survivorship were interviewed. We asked AYAs and parents to provide communication advice for oncology clinicians. Using thematic analysis, we identified categories of advice related to three overarching themes: interpersonal relationships, informational preferences, and delivery of treatment, resources, and medical care. AYAs and parents provided similar advice about the need for compassion, strong connections, hopefulness, commitment, and transparent honesty However, AYAs placed additional emphasis on clinicians maintaining a calm demeanor. Full article

There are various ethical issues in bereavement research. Most of the literature focuses on ethical issues involving adult participants. However, it is conceivable that research with minors poses particular ethical challenges, and little is known of the ethical issues involved in bereavement research with minors. A scoping review adhering to the PRISMA-ScR guidelines was conducted to address this gap and to contribute to better research practices. Searches in Embase, Emcare, EBM Reviews, Medline, PsycINFO (all accessed via Ovid), CINAHL, Scopus, SSCI, and the journals Death Studies and OMEGA identified 40 relevant peer-reviewed articles, while 25 relevant theses/dissertations were identified through ProQuest Global. The main ethical concerns identified include informed consent, risk to participants, and privacy and confidentiality. Findings of this review may inform bereavement researchers when designing their studies and to ensure the safety of their participants. The findings can also be used in clarifying the decisions made to a research ethics board, thus contributing to the quality of the research in this field. Future reviews may examine how the ethical issues reported in this review are similar or different to those reported in research with minors in other fields and expand to include more experimental research. Full article