Social work practice in perinatal palliative care: an overview
Palliative Care; adult; article; female; human; male; quality of life; palliative therapy; knowledge; bereavement; social worker; health care access; care behavior; collaborative care team; social work practice; Social Work; social work; social justice
Social workers in Perinatal Palliative Care (PPC) play an essential role in caring for birthing people carrying a baby with a life-limiting condition and their families. Perinatal palliative care is consistent with social work values concerning fostering quality of life and promoting social justice and access to care. Social workers play a multidimensional role in providing a holistic approach to caring for the birthing person, baby, and family. Although social workers may be part of an interdisciplinary care team, their role is not defined solely by the goals of the greater team, nor has it been discussed in depth in the perinatal palliative care literature. The purpose of this paper is to describe the knowledge, values, and skills essential to the role of the social worker in a hospital-based perinatal palliative care team. A case study will be used to illustrate the relevant practices, and implications are outlined.
Santiago-Warner S
Social Work in Health Care
2024
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/10.1080/00981389.2024.2316697" target="_blank" rel="noreferrer noopener">10.1080/00981389.2024.2316697</a>
Grieving Children' Death in an Intensive Care Unit: Implementation of a Standardized Process
Humans; Child; Grief; Intensive Care Units; Health Personnel; Only Child; Terminal Care; Bereavement; Burnout Professional
Background: The grief that accompanies witnessing the death of a child puts health care professionals at risk of secondary trauma, burnout, and turnover when left unaddressed. Objective: Support staff well-being and promote resiliency. Methods: Descriptive implementation of a structured, peer-to-peer bereavement support program for intensive care unit (ICU) staff at a tertiary children's hospital. Results: Thirty-five virtual sessions were held over the period of one year.Through these sessions, participants shared perspectives and normalized reactions, and explored potential coping strategies. Post-session feedback surveys demonstrated the negative impact of a death on the personal or work life of ICU staff. Additionally, nearly all reported some level of burnout. Conclusions: The sessions were feasible and positively impacted staff coping and well-being. Barriers and facilitators to session attendance, as well as suggestions for improvement, were also explored. Implications for practice and future research are discussed. No clinical trial registration is applicable.
Delgado-Corcoran C; Wawrzynski SE; Mansfield K; Fuchs E; Yeates C; Flaherty BF; Harousseau M; Cook L; Epps JV
Journal of Palliative Medicine
2024
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<a href="http://doi.org/10.1089/jpm.2023.0134" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0134</a>
The most painful estrangement: Death at birth
article; human; social support; palliative therapy; coping; mourning; stillbirth; guilt; depression; emotion; identity; suicide; posttraumatic stress disorder; personal experience; bereavement; avoidance behavior; emotional stress; child death; prevalence; decision making; family history; regret; emotional support; lactation; sadness; fear; continuing education; sorrow; community care; stigma; spontaneous abortion; self concept; shame; loneliness; alienation; complicated grief/dt [Drug Therapy]; family stress; naltrexone/dt [Drug Therapy]; rage; social bonding; traffic accident
More than two million babies a year die during or before birth around the world, evoking grief that is traumatic. Because the psychological, physical, social, and emotional ramifications of grief following a baby's death are so enduring and intense, social support is essential to helping families cope. In particular, emotional acts of caring and judicious use of language are crucial, avoiding the use of the terms that belittle the value of the baby's life and the importance of the baby as part of a family history. Traumatic grief informed continuing education can aid providers in increasing sensitivity to the needs of grieving families and minimize additional trauma and suffering in the aftermath of such loss.
Cacciatore J
Seminars in Perinatology
2024
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.semperi.2023.151870" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2023.151870</a>
Palliative care for children: methodology for the development of a national clinical practice guideline
child; article; human; palliative therapy; systematic review; advance care planning; randomized controlled trial; shared decision making; practice guideline; therapy; psychosocial care; qualitative research; bereavement; drug administration; special situation for pharmacovigilance; evidence based medicine; methodology
Background: Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need to update the first Dutch paediatric palliative care guideline with new scientific literature and new topics. This paper provides an overview of the methodology that is used for the revision of the Dutch paediatric palliative care guideline and a brief presentation of the identified evidence. Methods: The revised paediatric palliative care guideline was developed with a multidisciplinary guideline panel of 72 experts in paediatric palliative care and nine (bereaved) parents of children with life-threatening or life-limiting conditions. The guideline covered multiple topics related to (refractory) symptom treatment, advance care planning and shared-decision making, organisation of care, psychosocial care, and loss and bereavement. We established six main working groups that formulated 38 clinical questions for which we identified evidence by updating two existing systematic literature searches. The GRADE (CERQual) methodology was used for appraisal of evidence. Furthermore, we searched for additional literature such as existing guidelines and textbooks to deal with lack of evidence. Results: The two systematic literature searches yielded a total of 29 RCTs or systematic reviews of RCTs on paediatric palliative care interventions and 22 qualitative studies on barriers and facilitators of advance care planning and shared decision-making. We identified evidence for 14 out of 38 clinical questions. Furthermore, we were able to select additional literature (29 guidelines, two textbooks, and 10 systematic reviews) to deal with lack of evidence. Conclusions: The revised Dutch paediatric palliative care guideline addresses many topics. However, there is limited evidence to base recommendations upon. Our methodology will combine the existing evidence in scientific literature, additional literature, expert knowledge, and perspectives of patients and their families to provide recommendations.
van Teunenbroek KC; Kremer LCM; Verhagen AAE; Verheijden JMA; Rippen H; Borggreve BCM; Michiels EMC; Mulder RL
BMC Palliative Care
2023
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/s12904-023-01293-3" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01293-3</a>
Exploring and Supporting Parents' Stories of Loss in the NICU: A Narrative Study
child; article; controlled study; human; prematurity; palliative therapy; child parent relation; grief; uncertainty; bereavement; ethics; congenital malformation; morality; neonatal intensive care unit; infant; decision making; medical care; narrative
Death is no stranger to the neonatal intensive care unit (NICU). Extreme prematurity, congenital abnormalities, and other complexities can turn what was hoped to be a very exciting moment in a family's life into one of despair and grief. There are many infants that not only do not survive but also have a medicalized death necessitating complex decision-making, weighing quality versus duration of life. We can learn from the stories of parents who chose palliative care for their children. In this narrative inquiry study, we elicited bereaved parents' stories and reflections on the lives of their children and the care they received in the NICU. From a narrative ethics perspective, their stories speak to normative aspects of parenting, decision-making, and receiving medical care that affect their moral sense-making of their NICU experiences as well as their longer-term living with the loss of their children. Their stories express the importance of having had meaningful time with their children, maintaining direct and frequent communication, acknowledging uncertainty, and emphasizing compassion as methods of providing support to parents as they navigate their bereavement.
Lakhani J; Mack C; Kunyk D; van Manen M
Qualitative Health Research
2023
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<a href="http://doi.org/10.1177/10497323231201023" target="_blank" rel="noreferrer noopener">10.1177/10497323231201023</a>
Development of an Institution-Wide Pediatric End-of-Life Summit
child; article; human; terminal care; school child; medical society; bereavement; teaching hospital; clinician; special situation for pharmacovigilance
End-of-life (EOL) care in pediatrics is a unique subspecialty lacking adequate provider education and training. Patient and family outcomes may improve when clinicians are provided with training in this care. Recognizing the need for this specialized education, a small group of bereavement coordinators created an institution-wide pediatric EOL summit at a large urban pediatric teaching hospital. One hundred forty-five clinicians from 14 diverse disciplines attended the first annual pediatric EOL summit. A survey was sent to the participants for feedback. The survey results suggested an overwhelmingly positive response to the summit. Continuing to provide this educational conference is critical to improving care for patients and families, particularly at the end of life.
Edson J; Abecassis L; Beke DM; McGorman T
Journal of Hospice and Palliative Nursing
2023
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/NJH.0000000000000982" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000982</a>
“It's Hard Not to Have Regrets:” Qualitative Analysis of Decisional Regret in Bereaved Parents
Parents; child; Bereavement; pediatric cancer; parent; bereavement; decisional regret
Context Bereaved parents may have heightened risk for decisional regret; however, little is known about regret early in bereavement. Objectives We characterized decisional regrets endorsed by parents of children who died from cancer within the first two years of their bereavement. Methods We analyzed responses from a cross-sectional, dual site study of parents 6 to 24 months from their child's death. Parents indicated whether they had regrets about decisions made at the end of their child's life (yes/no/I don't know) and elaborated with free text. We used content analysis to identify recurrent categories in parents’ responses. Results A total of 125 parents of 88 children completed the survey; 123 responded to the decisional regret item and 84 (63%) elaborated with free text. Forty-seven (38%) parents reported decisional regret(s), 61 (50%) indicated no regret(s), and 15 (12%) were unsure. Parental free-text responses related to 5 categories: treatments, including those pursued and/or not pursued (n=57), decision-making processes (n=35), relationships with their child and care team (n=26), child suffering (n=10), and end-of-life characteristics (n=6). The relative frequency of categories was similar in parents with and without decisional regret, but self-blame was more common in responses from parents with decisional regret. Conclusion Many bereaved parents endorse decisional regret in early bereavement. Treatments and decision-making processes were most cited among parents both with and without regret. Identifying factors associated with heightened parental risk of decisional regret using longitudinal study is an important focus of future research.
Feifer D; Broden E; Baker JN; Wolfe J; Snaman J
Journal of Pain and Symptom Management
2023
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.144" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.144</a>
Nursing care and nurses' understandings of grief and bereavement among patients and families during cancer illness and death – A scoping review
Bereavement; Nursing Care
Grief and bereavement is often present among patients and families during courses of cancer. Offering support for both patients and families is essential in the context of cancer nursing. Present scoping review offers an overview of existing knowledge, which can be used for inspiration in cancer-nursing. Hence, the objective of this study was to identify understandings of grief and bereavement, which is present in a cancer-nursing context and to develop insight on existing knowledge about nursing interventions targeted patients and their families' experiences of grief and bereavement due to cancer illness. The scoping review is conducted, inspired by the methodology of Joanna Briggs Institute. Sources of evidence are retrieved from a large number of databases and resources. Twenty-two studies are included in the scoping review. The studies are retrieved from eight different countries. Findings are mapped in nine categories. Eight categories related to nursing care targeted patients and/or families experiencing grief and/or bereavement; One category related to understandings of grief and/or bereavement targeted patients and families. Nursing interventions to support patients and their families during grief and bereavement covers a broad spectrum of interventions. E.g. communication; using artwork; cultural and spiritual care; bereavement care; supporting coping strategies. Different models and theoretical understandings were identified. E.g. The dual process model of coping with bereavement; A Divorced Family-focused Care Model; Family Strengths-Oriented Therapeutic Conversation (Fam-SOTC); and understandings of children's grieving process. • Complexity is present when caring for patients and families experiencing grief and bereavement during cancer illness. • This study identified multiple nurse interventions targeted patients and families experiencing grief and bereavement during cancer illness. • Present scoping review identified theoretical understandings of grief and bereavement in the context of cancer nursing.
Madsen R; Larsen P; Fiala CAM; Marcussen J
European Journal of Oncology Nursing
2023
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<a href="http://doi.org/10.1016/j.ejon.2022.102260" target="_blank" rel="noreferrer noopener">10.1016/j.ejon.2022.102260</a>
Early Bereavement Psychosocial Outcomes in Parents of Children Who Died of Cancer With a Focus on Social Functioning
Child; Bereavement; Only Child
PURPOSE:The early grief experience of parents of children who died of cancer remains understudied. Understanding psychosocial symptomology and functioning of parents early in their bereavement is essential to developing supportive interventions aimed at offsetting poor mental and physical outcomes.METHODS:Parents of children from two centers who died of cancer 6 to 24 months before were mailed a survey that included validated tools and additional Likert scale-based questions. We used correlation and univariate and multiple regression analyses to assess the associations between psychosocial and grief outcomes and parental social functioning.RESULTS:One hundred twenty-five parents representing 88 children completed the survey. Most respondents identified as female (63%), White (84%), and non-Hispanic (91%). The mean time since child's death was 14.7 (range, 8-26) months. Bereaved parents' mean score for social functioning was only slightly below normative values, and most parents indicated post-traumatic growth and adaptive coping. Parents had high symptom levels for depression, anxiety, post-traumatic stress, and prolonged grief, with those identifying as female having significantly higher symptom scores. Using multivariate analysis, parental scores for resilience and continuing bonds were associated with higher social functioning scores and parental scores for depressive symptoms and prolonged grief were associated with lower social functioning scores.CONCLUSION:Although bereaved parents exhibit resilience and positive coping, they also show high levels of psychosocial distress in the first 2 years after their child's death, which may reflect the typical parental bereavement experience. Screening for low parental social functioning may identify parents who would benefit from additional support early in bereavement.
Snaman JM; Mazzola E; Helton G; Feifer D; Morris SE; Clark L; Baker JN; Wolfe J
JCO Oncology Practice
2023
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<a href="http://doi.org/10.1200/OP.22.00538" target="_blank" rel="noreferrer noopener">10.1200/OP.22.00538</a>
Factors associated with mental health service use among families bereaved by pediatric cancer
child; Bereavement; article; controlled study; female; human; major clinical study; male; palliative therapy; education; sibling; Mental Health Services; bereavement; cooperation; distress syndrome; randomized controlled trial; health care personnel; self report; multicenter study; race; mother; home visit; malignant neoplasm; demography; father; support group; self help; educational status; mental health service; Child Behavior Checklist
OBJECTIVES: We identified types of interventions used by bereaved family members and examined associations with demographic and medical factors. Furthermore, we examined associations between distress and intervention use among bereaved families. METHOD(S): Bereaved families (n = 85) were recruited from three children's hospitals 3-12 months after their child died of cancer. One eligible sibling (ages 8-17) per family was randomly selected for participation. During home visits 1-year post-death, parents reported on their own and the sibling's intervention use, helpfulness, and dose (self-help books, support groups, therapy, medication), and distress, defined as internalizing, externalizing, and total problems (Adult Self Report, Child Behavior Checklist). RESULT(S): Fifty percent of mothers used medications (n = 43); utilization was low among fathers (17%, n = 9) and siblings (5%, n = 4). Individuals with more total problems were more likely to use medications (mothers: rpb = 0.27; p = 0.02; fathers: rpb = 0.32; p = 0.02; siblings: rpb = 0.26; p = 0.02). Mothers and siblings with more total problems used more services (r = 0.24; p = 0.03 and r = 0.29; p = 0.01, respectively). Among mothers, the overall regression was significant, R2 = 0.11, F(2, 80) = 4.954, p = 0.01; the deceased child's age at death was significantly associated with total services used (b = 0.052, p = 0.022). Among fathers, the overall regression was significant, R2 = 0.216, F(3, 49) = 4.492, p = 0.007; race and years of education were significantly associated with total services used (b = 0.750, p = 0.030 and b = 0.154, p = 0.010). Among siblings, the overall regression was significant R2 = 0.088, F(2, 80) = 3.867, p = 0.025; greater total problems were significantly associated with total services used (b = 0.012, p = 0.007). SIGNIFICANCE OF RESULTS: Although few background factors were related to intervention use, bereaved mothers and siblings may seek services if they have more distress. Healthcare providers should be aware of the types of services that are most often utilized and helpful to bereaved families to connect them with appropriate resources. Future research should investigate other predictors of intervention use and outcomes after the death of a child.
Hill KN; Olsavsky A; Barrera M; Gilmer MJ; Fairclough DL; Akard TF; Compas BE; Vannatta K; Gerhardt CA
Palliative and Supportive Care
2022
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<a href="http://doi.org/10.1017/S1478951522001018" target="_blank" rel="noreferrer noopener">10.1017/S1478951522001018</a>
Protective and risk factors in the grieving process among cancer-bereaved
Parents; Female; Male; Risk Factors; Attitude to Death; Neoplasms; Quality of Life; Bereavement; Grief; Qualitative Studies; Human; Support Psychosocial; Thematic Analysis; Funding Source
This Norwegian nationwide study explored cancer-bereaved parents'
Rasouli O; Øglænd IS; Reinfjell T; Eilertsen MEB
Death Studies
2023
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/10.1080/07481187.2022.2142324" target="_blank" rel="noreferrer noopener">10.1080/07481187.2022.2142324</a>
Consulting parents bereaved by childhood cancer: A qualitative study to improve bereavement services
Parents; Bereavement; Communication; Interviews; Referral and Consultation; Qualitative Studies; Empathy; Human; Thematic Analysis; Childhood Neoplasms; Patient Care; Psychosocial Factors
Twelve Australian parents bereaved by childhood cancer were interviewed
Loxton I; Oxlad M; Perry A
Death Studies
2023
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/10.1080/07481187.2022.2142325" target="_blank" rel="noreferrer noopener">10.1080/07481187.2022.2142325</a>
Gender Differences in Depressive Symptoms Following Child Death in Later
Child; Female; Male; Prognosis; United States; Risk Factors; Bereavement; Parent-Child Relations; Adult; Age Factors; Mortality; Sex Factors; Middle Age; Adaptation Psychological; Fathers; Aged; Depression; Mother-Child Relations; Mothers; Human; Father-Child Relations; Evaluation; Only Child; Funding Source; Trends; Vulnerability; Psychosocial Factors; Comparative Studies; Recovery; In Adulthood; In Middle Age; In Old Age
Objectives: This study examined short- and long-term psychological adjustment to parental bereavement in later life for mothers and fathers. Methods: Using 9 waves of data from the United States (1998-2014 Health and Retirement Study), I estimated trajectories of mothers' and fathers' depressive symptoms surrounding child death in later life, highlighting gender differences in adjustment. Moderation analyses were performed to uncover heterogeneous trajectories across parental characteristics. Results: Mothers were more likely to experience child death and reported higher depressive symptoms prior to parental bereavement than fathers. Mothers and fathers who lost a child reported an increase in depressive symptoms that diminished over time. The short-term elevation in depressive symptoms was marginally greater for mothers than fathers, but depressive symptoms declined at a faster rate for mothers than fathers in the years following the death. These counterbalancing changes resulted in mothers and fathers returning to their respective prebereavement levels of depressive symptoms between 2 and 4 years postbereavement. Parental age moderated trajectories distinctly by gender, and the presence of surviving children buffered the impact of child death on depressive symptoms for mothers but not fathers. Discussion: Mothers more often experience child death in later life and their adjustment process differs from that of fathers, underscoring the salience of gender in shaping how older parents respond to the death of a child. Older parents and mothers without surviving children are vulnerable to prolonged elevations in depressive symptoms following the death of a child in later life.
Mellencamp KA
Journals of Gerontology: Series B
2023
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<a href="http://doi.org/10.1093/geronb/gbac189" target="_blank" rel="noreferrer noopener">10.1093/geronb/gbac189</a>
The Butterfly Effect: Supporting Pediatric Trainee Bereavement Through a Condolence Card Project
Bereavement; article; human; death; pediatrics; clinical practice; grief; terminal care; dying; wellbeing; comfort; resident; human relation; pediatrician; bereavement; medical education; frustration; coping behavior; work environment; posthumous care; anger; bereavement support; medical student; catharsis; gesture; loneliness
As medical students and residents, we have all grappled with patient death and dying at some point in our training. These experiences often remain with us, informing our clinical practice, our personal wellbeing, and the ways in which we build relationships with patients and families. One memory, among many, inspired our work to bolster and reform trainee bereavement practices. On Monday, I walked into the hospital apprehensively. I was nearing the end of a month-long rotation in the medical-surgical ICU, my first experience caring for critically ill children during residency. I heard the news from my coresident: my patient had died on Sunday. Although it was not unexpected, it still hurt all the same. It was 5:50 am when I rounded the hospital corner and approached his old room. As I peeked inside, my heart sank. Just 3 days ago, this room was full of people and things and sounds;...
Rabinowitz DG; Korus RE; Eastland SL; Bloomhardt HM
Hospital Pediatrics
2023
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/hpeds.2023-007225" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2023-007225</a>
Max's legacy: an evaluation of the impacts of baby loss on staff and families
Female; Descriptive Research; Human; Thematic Analysis; Bereavement; Family Attitudes; Semi-Structured Interview; Abortion, Spontaneous; After Care; Attitude of Health Personnel; Focus Groups; Multimethod Studies; Pregnancy Trimester, First; Pregnancy; Safety; United Kingdom
Background/Aims There is a paucity of literature on the impact of baby loss experiences on family and staff. This study aimed to explore existing support available to families and staff in a UK hospital for first trimester miscarriage, as well as experiences of baby loss, and make recommendations for future care. Methods A mixed-methods service evaluation was conducted. Data were gathered from healthcare professionals (surveys, phase 1; interviews, phase 2) and service users who had experienced baby loss (focus group discussions, phase 3). Qualitative data were analysed thematically, alongside descriptive quantitative results. Results Communication, support, recognition of loss and environment were key contributors to positive and negative experiences for staff and families. Peer support enhanced communication, reduced isolation and increased ability to function on a daily basis following loss. Conclusions Formal, resourced maternity bereavement aftercare services are essential to the support the experiences, outcomes and safety of staff and families experiencing baby loss and miscarriage.
Whitehouse C; Crane R; Rostron H; Cater K
British Journal of Midwifery
2023
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/10.12968/bjom.2023.31.7.368%5C">10.12968/bjom.2023.31.7.368\</a>"
An Analysis of John Bowlby’s Mourning Stages in Family Art Therapy as a Way to Help the Family Mourning Process
Bereavement; Hospice Care; Family; Art Therapy; Pallative care
Purpose: Pediatric palliative care is a rapidly developing multidisciplinary approach that supports children with life-limiting conditions and their families. However, there is limited evidence on how to effectively support bereaved parents and siblings. The purpose of this study is to explore the therapeutic impact of art therapy for bereaved families, in accordance with John Bowlby’s four-stage theory of mourning. Methods: This single-case study employed the consensual qualitative research method. Art therapy records of bereaved families were reviewed individually, and records from one case were selected. Verbal statements made during the art therapy sessions and photocopies of the artworks were analyzed to understand the mourning process of the family. Results: A total of 113 statements and 12 artworks from 19 art therapy sessions were analyzed. As the art therapy progressed, each family member exhibited a pattern of engaging in more positive and healthy conversations in daily life, demonstrating the final stage of mourning: reorganization and recovery. The family dynamics also revealed that they reconstructed their inner world and redefined the meaning of loss, which is the final stage of mourning. The art therapy provided a safe environment for the family, allowing them to fulfill their wishes and regain the strength needed for recovery. Conclusion: This study suggests that art therapy supports bereaved families in alleviating their psychological difficulties, engaging in a healthy mourning process, and functioning as members of society. Further research is needed to better understand the effect of art therapy as a bereavement support tool in pediatric palliative care.
Seon AY; Sung HA; Cho HK; Min-Sun K
Journal of Hospice and Palliative Care
2023
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/10.14475/jhpc.2023.26.2.27%5C">10.14475/jhpc.2023.26.2.27\</a>"
Culturally and linguistically diverse men's experiences of support following perinatal death: A qualitative study
Men; Descriptive Statistics; Human; Thematic Analysis; Male; Qualitative Studies; Australia; Perinatal Death; Bereavement; Comparative Studies; Psychosocial Factors; Support, Psychosocial; Communities; Coping; Cultural Diversity; Family Centered Care; Health Personnel; Leaders; Life Experiences; Linguistics; Public Policy; Self-Advocacy; Semi-Structured Interview; Stigma
Aims and objectives: To explore culturally and linguistically diverse men's experiences of support after perinatal death, including barriers and facilitators to support and how healthcare providers, systems and policies can best support families. Background: Many groups of culturally and linguistically diverse families in Australia are at higher risk of experiencing perinatal death. Culturally sensitive bereavement services are essential; however, there has been no previous research specifically examining culturally and linguistically diverse men's experiences of support following perinatal death. Design: Individual semi-structured interviews were completed with healthcare providers, community leaders and culturally and linguistically diverse men who had experienced a perinatal death in Australia (n = 16). Data were analysed using Thematic Analysis and COREQ guidelines were followed. Results: Men's need for support following perinatal death was associated with stigma, and shaped by culturally-relevant religion and ritual, and connection to community and family. Significant barriers to men seeking and gaining support included challenges with self-advocacy and navigating the woman-centred nature of perinatal care in Australia. Conclusions: Culturally and linguistically diverse men's specific needs should be included in the development of policy and practice surrounding perinatal death. While perinatal bereavement care guidelines acknowledge the importance of culturally informed care following perinatal death, there remains a lack of culturally specific supports available, particularly for culturally and linguistically diverse men. Relevance to clinical practice: Specific recommendations from this research include increasing community liaison officers or cultural consultants in hospitals and support organisations; providing culturally and linguistically diverse support groups; adopting family-centred and father-inclusive language in all perinatal death support services and ensuring clear communication and targeted assistance for culturally and linguistically diverse men to self-advocate for their baby and access to support. Patient or public contribution: This study came out of consultation with community members and member checking of results was conducted to ensure adequate representation of participants' views.
Pearson T; Obst K; Due Cl
Journal of Clinical Nursing
2023
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/jocn.16465%5C">10.1111/jocn.16465\</a>"
Evaluation of service user-led workshops in children's palliative care education
palliative care; Palliative Care; child health; grief; education; bereavement; clinical; end of life care; professional; post-registration education; pre-registration education
Children's nurses report feeling unprepared when caring for children with life-limiting conditions and their families, while the value of including service users in the provision of nursing education is increasingly recognised. This small-scale service evaluation examined the effect on learning of service user-led workshops as part of a module for final-year children's nursing students and post-registration children's nurses. The workshops focused on the experience of children's palliative care and child bereavement from the parents' perspective. Findings from evaluation data indicated high levels of satisfaction with the workshops and identified three themes: safe space, shift in perspective and enhancing practice. A model of service user facilitated learning describes how these themes can enable learning about children's palliative care. This evaluation suggests that the involvement of service users as partners in healthcare education can be transformative, enabling children's nursing students to examine their own perspectives and consider ways to enhance their future practice.
Pavey J; Kembrey J; Beringer A
Nursing Children and Young People
2023
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/10.7748/ncyp.2023.e1455" target="_blank" rel="noreferrer noopener">10.7748/ncyp.2023.e1455</a>
Availability of bereavement support following traumatic pediatric death in a large metropolitan area
child; Bereavement; terminal care; human; grief; bereavement; self help
Following an unexpected pediatric death, survivors undergo unique trauma. Medical examiners (MEs) evaluate most of these deaths. We evaluated the bereavement support available to survivors in the Chicagoland area following a pediatric death. We had two goals: to characterize the available bereavement support options and compare the locations (by zip code) of support groups with the locations (by zip code) in which pediatric ME cases occurred. We identified 48 organizations that provided bereavement support services at 74 locations in the summer and fall of 2020. Locations by zip codes in which the largest number of ME cases occurred did not have support groups. Locations in which more ME cases occurred generally had lower-income populations and a greater proportion of Black or Hispanic residents. Bereavement support following pediatric death is inadequate and unevenly distributed across the Chicagoland area.
Divakar A; James K; Mayorga A; Michelson KN
Death Studies
2023
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/10.1080/07481187.2023.2170492" target="_blank" rel="noreferrer noopener">10.1080/07481187.2023.2170492</a>
Sleep quality moderates the association between family bereavement and heart rate variability
Bereavement; Sleep; Family; Descriptive Statistics; Human; Death; Questionnaires; Surveys; Bereavement; Cardiovascular Diseases; Comparative Studies; Family Attitudes; Family Relations; Funding Source; Health Behavior; Heart Rate Variability; Insomnia; Psychological Distress; Psychological Well-Being; Psychosocial Factors; Sleep Quality; United States; Vulnerability
Two separate bodies of literature point to the link between family bereavement and cardiovascular health and between sleep quality and cardiovascular outcomes. However, less is known about the joint influence of family bereavement and sleep quality on cardiovascular functioning. The aims of this study were to examine the relationships between experiencing the death of a family member and heart rate variability (HRV) and to further explore whether these associations differ by sleep quality. Using data from the Midlife in the United States (MIDUS) Biomarker Project, the sample for this study included respondents who experienced the death of an immediate family member - father, mother, spouse, sibling, or child - within a year before the Biomarker project and those who did not experience any deaths (N = 962). We used two measures of HRV and sleep quality was measured using the Pittsburgh Sleep Quality Index. Results showed that experiencing the death of a family member was associated with worse HRV only among those with poor sleep quality and not for those with good sleep quality. These results suggest that poor sleep quality may indicate psychophysiological vulnerability for those who experienced the death of a family member. Interventions to improve sleep quality could be effective in enhancing cardiovascular health of bereaved individuals.
Chai HW; Jester DJ; Lee S; Joo S; Umberson DJ; Almeida DM
Journal of Behavioral Medicine
2023
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/s10865-022-00388-1%5C">10.1007/s10865-022-00388-1\</a>"
Bereaved mothers' experience of expressing and donating breast milk: An interpretative phenomenological study
Female; Attitude to Death; Bereavement; Grief; Adult; Altruism; Mothers; Phenomenological Research; Human; Life Experiences; Evaluation; Northern Ireland; Thematic Analysis; Coping; Perinatal Death; Funding Source; Milk Banks; Milk, Human; Maternal Attitudes; Semi-Structured Interview; Psychosocial Factors; Maternal Role; Milk Ejection; Autonomy; Milk Expression
Abstract Perinatal loss is a devastating event for any mother. What is often overlooked is a mothers continued ability to lactate following the death of her child. Donor breast milk is a commodity highly sought after given its value for feeding sick babies resident in Neonatal Intensive Care Units. This study aimed to explore the lived experience of mothers who have expressed and donated their breast milk following the loss of their infant. Seven bereaved mothers who donated milk to the Human Milk Bank in Northern Ireland were recruited. These women took part in semistructured interviews, which explored their experiences of perinatal loss and the role that expression/donation played for them in their grief. Their accounts were analysed using a qualitative interpretative phenomenological analysis (IPA) method. After transcription and analysis, three superordinate themes emerged; (1) fulfilling the mother role; (2) the power of being able to 'Do'; (3) making good from the bad. The stories of these women reflect the independent and individual nature of grief. Each mother gained a great deal of comfort in having the ability to express milk. For some this created a physical connection to their child, for others, it created time alone to process what had happened and for all, it created a sense of autonomy and ownership in what was otherwise a very turbulent time in their lives.
Ward G; Adair P; Doherty N; McCormack D
Maternal & Child Nutrition
2023
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/mcn.13473" target="_blank" rel="noreferrer noopener">10.1111/mcn.13473</a>
Assessing HeartSong as a Neonatal Music Therapy Intervention: A Qualitative Study on Personal and Professional Caregivers' Perspectives
Infant, Newborn; Child; Bereavement; Intensive Care Units, Neonatal; Interpersonal Relations; Attitude of Health Personnel; Qualitative Studies; Human; Support, Psychosocial; Music Therapy; Heart Rate; Telephone; Parental Attitudes; Memory; Thematic Analysis; Parental Role; Caregiver Attitudes; Semi-Structured Interview; In Infancy and Childhood; Attitude to Medical Treatment; Extended Family; Singing
Abstract Background: The music therapy HeartSong intervention pairs newborn infant heartbeats with parents' Song of Kin. Formal evidence on professional and personal caregiver perspectives of this intervention is lacking. Purpose: This survey study evaluates the HeartSong music therapy intervention from parent and staff perspectives. Methods: A qualitative study assessing inclusion of HeartSong for family neonatal intensive care unit (NICU) care surveyed 10 professional caregivers comprising medical and psychosocial NICU teams anonymously reflecting their impressions of the intervention. Digital survey of parents/guardians contacted through semistructured phone interviews relayed impressions of recordings: subsequent setup, Song of Kin selection, and use of HeartSong, including thoughts/feelings about it as an intervention. Results: Professional and personal caregivers valued the HeartSong intervention for bereavement support, family support, including parental, extended family/infant support, and to enhance bonding. Emergent themes: memory-making, connectedness/closeness, support of parent role, processing mental health needs of stressful NICU days, and subsequent plans for lifelong HeartSong use. Therapeutic experience was named as a crucial intervention aspect and participants recommended the HeartSong as a viable, accessible NICU intervention. Implications for practice and research: HeartSong's use showed efficacy as a clinical NICU music therapy intervention for families of critically ill and extremely preterm infants, when provided by trained, specialized, board-certified music therapists. Future research focusing on HeartSong in other NICU populations might benefit infants with cardiac disease, parental stress, and anxiety attending to parent-infant bonding. Costs and time benefits related to investment are needed before implementation is considered.
van Dokkum NH; Fagan LJ; Cullen M; Loewy JV
Advances in Neonatal Care
2023
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/anc.0000000000001068" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000001068</a>
‘Whose Milk Was It, Really? … It Was a Gift, a Savior, a Healer, and a Connector’: Reflections on a Collaborative Autoethnography of Breastmilk Donation after Stillbirth
Collaboration; Bereavement; Grief; Interpersonal Relations; Life Experiences; Infant Death; Perinatal Death; Lactation; Milk Banks; Milk, Human; Donor Milk; Paternal Attitudes; Ethnographic Research; Living Donors; Milk; Milk Ejection
This is the intertwined story of three unique individuals—each of us parents, researchers, givers and takers—who met and changed each other’s lives, whilst simultaneously struggling to comprehend and make meaning out of our own personal losses. After coming to terms with their inability to have another biological child, Shachar and his wife adopted a baby. Ayelet and Alison both gave birth to stillborn babies. Subsequently, Ayelet followed conventional Israeli medical guidelines dictating the drying up of her milk, whilst Alison rejected those regulations and chose to continue lactating, which eventually led to her donating her milk to Shachar’s adopted baby. Our stories are grounded in the patriarchal Israeli context that pressures bereaved individuals to ‘move on’ quickly, silencing loss and grief (Leichtentritt et al., 2016). In this reflective piece, we propose a perspective on our interconnected story of human milk donation as a counter-practice to silencing loss, by allowing shared relational grief. [...]
Timor-Shelvin S; Oreg A; Perez AS
British Journal of Social Work
2023
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/10.1093/bjsw/bcad025" target="_blank" rel="noreferrer noopener">10.1093/bjsw/bcad025</a>
Appropriateness of end-of-life care for children with genetic and congenital conditions: a cohort study using routinely collected linked data
child; Cohort Studies; Belgium; Terminal Care; terminal care; article; female; human; major clinical study; male; palliative therapy; pediatrics; cohort analysis; physician; nuclear magnetic resonance imaging; health care system; general practitioner; decision making; bereavement; computer assisted tomography; congenital disorder; drawing; administrative health data; genetic association; genetic disorder; empirical research; paramedical personnel; X ray
Abstract This study aims to evaluate the appropriateness of end-of-life care for children with genetic and congenital conditions. This is a decedent cohort study. We used 6 linked, Belgian, routinely collected, population-level databases containing children (1-17) who died with genetic and congenital conditions in Belgium between 2010 and 2017. We measured 22 quality indicators, face-validated using a previously published RAND/UCLA methodology. Appropriateness of care was defined as the overall "expected health benefit" of given healthcare interventions within a healthcare system exceeding expected negative outcomes. In the 8-year study period, 200 children were identified to have died with genetic and congenital conditions. Concerning appropriateness of care, in the last month before death, 79% of children had contact with specialist physicians, 17% had contact with a family physician, and 5% received multidisciplinary care. Palliative care was used by 17% of the children. Concerning inappropriateness of care, 51% of the children received blood drawings in the last week before death, and 29% received diagnostics and monitoring (2 or more magnetic resonance imaging scans, computed tomography scans, or X-rays) in the last month. Conclusion: Findings suggest end-of-life care could be improved in terms of palliative care, contact with a family physician and paramedics, and diagnostics and monitoring in the form of imaging. What is Known: • Previous studies suggest that end-of life care for children with genetic and congenital conditions may be subject to issues with bereavement, psychological concerns for child and family, financial cost at the end of life, decision-making when using technological interventions, availability and coordination of services, and palliative care provision. Bereaved parents of children with genetic and congenital conditions have previously evaluated end-of-life care as poor or fair, and some have reported that their children suffered a lot to a great deal at the end of life. • However, no peer-reviewed population-level quality evaluation of end-of-life care for this population is currently present. What is New: • This study provides an evaluation of the appropriateness of end-of-life care for children who died in Belgium with genetic and congenital conditions between 2010 and 2017, using administrative healthcare data and validated quality indicators. The concept of appropriateness is denoted as relative and indicative within the study, not as a definitive judgement. • Our study suggests improvements in end-of-life care may be possible, for instance, in terms of the provision of palliative care, contact with care providers next to the specialist physician, and diagnostics and monitoring in terms of imaging (e.g., magnetic resonance imaging, computed tomography scans). Further empirical research is necessary, for instance, into unforeseen and foreseen end-of-life trajectories, to make definitive conclusions about appropriateness of care.
Piette V; Deliens L; Debulpaep S; Cohen J; Beernaert K
European Journal of Pediatrics
2023
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/s00431-023-05030-z" target="_blank" rel="noreferrer noopener">10.1007/s00431-023-05030-z</a>
"They were here, and they still matter": A qualitative study of bereaved parents legacy experiences and perceptions
child; United States; Bereavement; adult; article; human; palliative therapy; grief; young adult; sibling; quality of life; epistemology; qualitative research; language; phenomenology; caregiver; perception; genetic transcription; semi structured interview; ritual; altruism
BACKGROUND: Legacy building interventions are used in pediatric healthcare settings to help families cope with difficult healthcare experiences and typically reserved for intentional use at or near the end of a child's life. However, little is known about how bereaved families perceive the concept of legacy that these practices are meant to address. Emerging research challenges the view of legacy as a standardized, handheld keepsake item but rather as a summation of qualities and experiences that affect those left behind. Therefore, more research is needed. AIM: To explore the legacy perceptions and experiences of bereaved parents/caregivers in an effort to inform legacy-oriented interventions in pediatric palliative care. DESIGN: In this qualitative, phenomenological study grounded in social constructionist epistemology, bereaved parent/caregivers completed a semi-structured interview about their legacy perceptions and experiences. The interviews were audio-recorded, transcribed, and analyzed using an inductive, open coding approach grounded in psychological phenomenology. SETTING/PARTICIPANTS: Participants were parents/caregivers and one adult sibling of children (ages 6months-18years) that died between 2000 and 2018 at a children's hospital in the Southeastern United States and spoke English as their primary language. <br/>RESULT(S): Sixteen parents/caregivers and one adult sibling were interviewed. Participants' responses converged across three themes: (1) definitions of legacy, including traits and characteristics, impacts on others, and the child's enduring presence; (2) manifestations of legacy, such as tangible items, experiences, traditions, and rituals, and altruism; and (3) factors perceived to affect legacy experiences, including characteristics of the child's death and one's personal grief process. <br/>CONCLUSION(S): Bereaved parents/caregivers define and experience their child's legacy in ways and manifestations that conflict with current legacy building interventions used in pediatric healthcare settings. Thus, an immediate shift from standardized legacy-oriented care to individualized assessment and intervention is needed to provide high-quality patient- and family-centered pediatric palliative care.
Jones MT; Albanese E; Boles JC
Palliative Medicine
2023
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/10.1177/02692163231180926" target="_blank" rel="noreferrer noopener">10.1177/02692163231180926</a>
Using Communication Tools to Explore Young Siblings' Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs
bereavement; communication; emotions; palliative care; siblings
Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with palliative care needs, and to determine what is important to them. Nine siblings, aged 6-14 years, were interviewed using four different communication tools: See-Hear-Do pictures, including the empty body as a separate element, Bear cards, and words originating from previous sibling research. Data were analyzed using conventional content analysis. Five categories emerged concerning aspects that the siblings described about their situation and things that they found important: being part of a special family; school-a place for leisure, friends, and learning; relentless feelings of guilt and self-blame; losses and separations; and awareness of death-not if, but when. Siblings of children with rare diseases expressed an awareness that their brother or sister would die, although still felt they were part of a special, happy family. Siblings of children with palliative care needs due to an accident described relentless feelings of self-blame and guilt. The needs of siblings may vary depending on the condition that resulted in the ill sibling's palliative care needs.
Kreicbergs U; Nilsson S; Jenholt Nolbris M; Lövgren M
Children
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/10.3390/children9050641" target="_blank" rel="noreferrer noopener">10.3390/children9050641</a>
Silent Mourning: Infant Death and Caring for Iranian Parents Under the Influence of Religious and Socio-cultural Factors
Humans; Infant; Grief; Infant Newborn; Intensive Care Units Neonatal; Parents; Iran; Death; Bereavement; Infant Death
Fadaei Z; Mirlashari J; Nikbakht NA; Ghorbani F
Journal of religion and health
2023
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="https://link.springer.com/article/10.1007/s10943-022-01684-5">10.1007/s10943-022-01684-5</a>
Context of a neonatal death affects parental perception of end-of-life care, anxiety and depression in the first year of bereavement
Bereavement; Perinatal Death; Terminal Care; Anxiety; Bereavement; Depression; Female; Humans; Infant; Infant Newborn; Parents/px [Psychology]; Perception; Prospective Studies; Terminal Care; Terminal Care/px [Psychology]
BACKGROUND: Neonatal death is often preceded by end-of-life medical decisions. This study aimed to determine whether the context of death - after a decision of withholding or withdrawing life-sustaining treatment (WWLST) or despite maximum care - was associated with subsequent risk of parental anxiety or depression. The secondary objective was to assess parents' perceptions of end-of-life care according to death context., METHODS: Prospective single center observational study of all neonatal deaths in a neonatal intensive care unit over a 5-year period. Data were collected during hospitalization and from face-to-face interviews with parents 3 months after the infant's death. Anxiety and depression were assessed using Hospital Anxiety and Depression Scale (HADS) questionnaires, completed by parents 5 and 15 months after death., RESULTS: Of 179 deaths, 115 (64%) occurred after the WWLST decision and 64 (36%) despite maximum care. Parental satisfaction with newborn care and received support by professionals and relatives was higher in the first condition. Sixty-one percent of parents (109/179) attended the 3-month interview, with the distribution between groups very close to that of hospitalization. The completion rates of the HADS questionnaires by the parents who attended the 3-month interview were 75% (82/109) at 5 months and 65% (71/109) at 15 months. HADS scores at 5 months were consistent with anxiety in at least one parent in 73% (60/82) of cases and with depression in 50% (41/82). At 15 months, these rates were, respectively, 63% (45/71) and 28% (20/71). Risk of depression at 5 months was lower after a WWLST decision (OR 0.35 [0.14, 0.88], p = 0.02). Explicit parental agreement with the WWLST decision had an equivocal impact on the risk of anxiety at 5 months, being higher when expressed during hospitalization, but not at the 3-month interview., CONCLUSIONS: Context of death has a significant impact on the emotional experience of parents after neonatal loss, which underlines the importance of systematic follow-up conversations with bereaved parents. Copyright © 2023. The Author(s).
Cambonie G; Desage C; Thaller P; Lemaitre A; de Balanda KB; Combes C; Gavotto A
BMC Palliative Care
2023
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/s12904-023-01183-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01183-8</a>
Exploring the Use of Arts-Based Interventions and Research Methods in Families of Seriously Ill Children: A Scoping Review
bereavement; family nursing; nursing practice; pediatric nursing; article; child; Child; family health; female; human; human experiment; male; nurse; Only Child; wellbeing
Family care is essential to pediatric nursing practice, as the entire family is affected by childhood illness. However, little is known about art making for therapeutic purposes and how art is used to better understand families' experiences. Our purpose was to examine the nature of arts-based interventions and research methods used with, and the experiences of families of children facing life-limiting and life-threatening illnesses, and those families who are bereaved. Academic peer-reviewed sources published between January 1999 and May 2022 were retrieved via four databases using key search terms. Twenty-five articles were analyzed, resulting in three multifaceted categories including Social, Emotional, and Family Health. Critical strengths and limitations were also identified. Art making has been incorporated into interventions and research studies due to its benefits for family well-being. Understanding the potential of art making can inspire nurses to implement such activities to enhance family nursing practice and research.
Bally JMG; Burles M; Spurr S; McGrath J
Journal of Family Nursing
2023
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/10.1177/10748407231165119" target="_blank" rel="noreferrer noopener">10.1177/10748407231165119</a>
Parent and Provider Perspectives of a Hospital-Based Bereavement Support Program in Pediatric Palliative Care
bereavement; bereavement support; grief; palliative therapy; questionnaire; article; Bereavement; child; cross-sectional study; expectation; female; human; human experiment; major clinical study; male; Palliative Care; pediatric hospital; program impact
Abstract Context: Bereavement is an individuated, nuanced experience, and its expression is different for each parent who has cared for a dying child. Evidence highlights support is valuable to navigate this loss. Objectives: To evaluate a Bereavement Support Program from the perspectives of both families and service providers. Methods: A cross-sectional study design explored the experiences and perspectives of the benefits of various program components. Respondents were asked about accessing program components, their expectations, and parents were asked to rate the impact of program components on their grief on a scale from one, (no impact) to 100 (positive impact). Space for free text was provided throughout for additional feedback. Setting/ participants: The survey was distributed through mailing lists of parents known to the service, referring service providers, and advertised in the program newsletter. Results: One hundred two respondents completed the survey and provided detailed comments about their experiences. Most interactions and program components were reported helpful by both parents and service providers. Parents (N = 60) reported a positive impact on grief across all program components (median impact on grief range 81-98, Interquartile range 68.5-99). There were, however, a considerable number of respondents who were unaware of some components. Conclusion: Bereavement care to navigate the devastating loss of a child is of paramount importance and can offer significant and beneficial resources for families. Findings have supported service development in a major tertiary paediatric hospital facilitating improved access for families, particularly for those in regional and rural locations.
Gundry A; Elvidge N; Donovan L; Bunker K; Herbert A; Bradford N
Journal of Pain and Symptom Management
2023
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.2023.02.002" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.02.002</a>
Talking about the End of Life, Death and Bereavement with Children's Literature
Bereavement; Child; child; adult; article; female; human; major clinical study; male; palliative therapy; terminal care; mourning; bereavement; Only Child; adolescent
Abstract The French national centre of palliative and end-of-life care (Centre national des soins palliatifs et de la fin de vie) offers each year an updated selection of nearly 200 children's books for helping adults who accompany children who are seriously ill, facing an end-of-life situation, in mourning, or more simply curious about death. In 2022, 26 books out of the 46 published the previous year related to the themes of serious illness, palliative care, death, and bereavement were chosen by a multi-professional reading committee. The objective of this article is thus to present a brief description of some of these books for children and adolescents. These books can be recommended to the parents met.Copyright © Lavoisier SAS 2022. Aborder la fin de vie, la mort et le deuil autour de la littérature de jeunesse Résumé Le Centre national des soins palliatifs et de la fin de vie propose une sélection actualisée chaque année de près de 200 albums et romans issus de la littérature de jeunesse aux adultes accompagnant un enfant gravement malade, confronté à une situation de fin de vie, en deuil ou plus simplement curieux de ce qui a trait à la mort. En 2022, 26 ouvrages sur les 46 publiés l’année précédente, relatifs aux thématiques de la maladie grave, des soins palliatifs, de la mort et du deuil, ont été choisis par un comité de lecture pluriprofessionnel. L’objectif de cet article est ainsi de présenter une brève description de certains de ces ouvrages pour les tout-petits, les enfants et les adolescents. Ces ouvrages peuvent être recommandés aux parents rencontrés.
Tete C
Psycho-Oncology
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/10.3166/pson-2022-0198" target="_blank" rel="noreferrer noopener">10.3166/pson-2022-0198</a>
It Was a Shared Duty': Bereaved Fathers' Perspectives, Experiences and Practices in Relation to their Partner's Lactation after Infant Death
Male; Bereavement; Infant; Palliative Care; Intensive Care Units Neonatal; Interpersonal Relations; Australia; Purposive Sample; Qualitative Studies; Health Policy; Data Analysis Software; Exploratory Research; Human; Descriptive Statistics; Phenomenological Research; Life Experiences; Thematic Analysis; Perinatal Death; Psychosocial Factors; Semi-Structured Interview; Milk Human; Donor Milk; Infant Death; Lactates; Lactation; Lactic Acid; Open-Ended Questionnaires; Paternal Attitudes; Paternal Role
This exploratory study targets a significant gap in the lactation and bereavement literature by exploring bereaved fathers' experiences, perspectives and practices in relation to their partner's lactation after stillbirth, neonatal or infant death. Semi-structured interviews were conducted with seven bereaved fathers in two Australian state/ territory jurisdictions. Purposive sampling ensured the partners of five of the fathers had been involved in bereaved breastmilk donation to a human milk bank. Thematic data analysis identified key themes that drew attention to the significant grief experienced by fathers and highlighted: (i) breastmilk and infant feeding holding significant meaning for some fathers especially within the neonatal intensive care or palliative care settings, (ii) the impact of diverse lactation management options on the awareness and involvement of fathers in their partner's lactation after infant death, (iii) fathers' provision of significant care and support for partners participating in bereaved breastmilk donation, (iv) bereaved breastmilk donation positively impacting some fathers' grief and meaning- making, and (v) bereaved families' requirement for enhanced lactation care, information and support. Results indicate the need for an enhanced focus on family-centred bereaved lactation care and acknowledgement of the positive role that bereaved breastmilk donation may have for both mothers and fathers following infant loss.
Noble-Carr D; Carroll K; Copland S; Waldby C
Breastfeeding Review
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/" target="_blank" rel="noreferrer noopener"></a>
Living With Loss: Study Protocol for a Randomized Controlled Trial Evaluating an Internet-Based Perinatal Bereavement Program for Parents Following Stillbirth and Neonatal Death
Male; Female; Bereavement; Parents; Quality of Life; Grief; Infant Newborn; Australia; Pregnancy; Internet; Clinical Trials; Perinatal Death; Scales; Psychosocial Factors; Prevention and Control
Background: Stillbirth and neonatal death are devastating pregnancy outcomes with long-lasting psychosocial consequences for parents and families, and wide-ranging economic impacts on health systems and society. It is essential that parents and families have access to appropriate support, yet services are often limited. Internet-based programs may provide another option of psychosocial support for parents following the death of a baby. We aim to evaluate the efficacy and acceptability of a self-guided internet-based perinatal bereavement support program "Living with Loss" (LWL) in reducing psychological distress and improving the wellbeing of parents following stillbirth or neonatal death.Methods: This trial is a two-arm parallel group randomized controlled trial comparing the intervention arm (LWL) with a care as usual control arm (CAU). We anticipate recruiting 150 women and men across Australia who have experienced a stillbirth or neonatal death in the past 2 years. Participants randomized to the LWL group will receive the six-module internet-based program over 8 weeks including automated email notifications and reminders. Baseline, post-intervention, and 3-month follow-up assessments will be conducted to assess primary and secondary outcomes for both arms. The primary outcome will be the change in Kessler Psychological Distress Scale (K10) scores from baseline to 3-month follow-up. Secondary outcomes include perinatal grief, anxiety, depression, quality of life, program satisfaction and acceptability, and cost-effectiveness. Analysis will use intention-to-treat linear mixed models to examine psychological distress symptom scores at 3-month follow-up. Subgroup analyses by severity of symptoms at baseline will be undertaken.Discussion: The LWL program aims to provide an evidence-based accessible and flexible support option for bereaved parents following stillbirth or neonatal death. This may be particularly useful for parents and healthcare professionals residing in rural regions where services and supports are limited. This RCT seeks to provide evidence of the efficacy, acceptability, and cost-effectiveness of the LWL program and contribute to our understanding of the role digital services may play in addressing the gap in the availability of specific bereavement support resources for parents following the death of a baby, particularly for men.Trial Registration: Australian New Zealand Clinical Trials Registry, ACTRN12621000631808 . Registered prospectively on 27 May 2021.
Loughnan SA; Boyle FM; Ellwood D; Crocker S; Lancaster A; Astell C; Dean J; Horey D; Callander E; Jackson C; Shand A; Flenady V
Trials
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/10.1186/s13063-022-06363-0" target="_blank" rel="noreferrer noopener">10.1186/s13063-022-06363-0</a>
A Grounded Theory Study on the Dynamics of Parental Grief during the Children's End of Life
Child; loss; end of life; Only Child; palliative; bereavement; coping with grief
AIM: Parents are increasingly confronted with loss during their child's end of life. Healthcare professionals struggle with parental responses to loss. This study aimed to understand parental coping with grief during their child's end of life. METHODS: A grounded theory study was performed, using semi-structured interviews with parents during the child's end of life and recently bereaved parents. Data were collected in four children's university hospitals and paediatric homecare services between October 2020 and December 2021. A multidisciplinary team conducted the analysis. RESULTS: In total, 38 parents of 22 children participated. Parents strived to sustain family life, to be a good parent and to ensure a full life for their child. Meanwhile parents' grief increased because of their hypervigilance towards signs of loss. Parents' coping with grief is characterised by an interplay of downregulating grief and connecting with grief, aimed at creating emotional space to be present and connect with their child. Parents connected with grief when it was forced upon them or when they momentarily allowed themselves to. CONCLUSION: The parents' ability to engage with grief becomes strained during the end of life. Healthcare professionals should support parents in their search for a balance that facilitates creating emotional space.
Kochen EM; Grootenhuis MA; Teunissen Sccm; Boelen PA; Tataranno ML; Fahner JC; de Jonge RR; Houben ML; Kars MC
Acta Paediatrica
2023
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.16716" target="_blank" rel="noreferrer noopener">10.1111/apa.16716</a>
Parents' Views on What Facilitated or Complicated Their Grief after Losing A Child to Cancer
Bereavement; Grief; Pediatric oncology; Parents; Coping
OBJECTIVES: The loss of a child is a devastating event, and bereaved parents often suffer intense and long-lasting grief reactions and are at risk for psychological symptoms. More knowledge about how parents cope with grief may improve the support to bereaved parents. This study, therefore, aimed to explore parents' views on what facilitated or complicated their grief coping after losing a child to cancer. METHODS: This study was derived from a nationwide postal survey. Cancer-bereaved parents (n = 161) provided written responses to two open-ended questions: "Is there anything that has helped you cope with your grief after your child's death?" and "Is there anything that made it difficult for you to cope with your grief?" Content analysis was used to analyze the responses. RESULTS: Parents reported that a supportive social network of family and friends, and having remaining children, facilitated their coping with grief. Meeting professional counselors and meeting other bereaved parents, connecting to memories of the deceased child in various contexts, including school and pediatric care settings, were also reported facilitating grief coping. Parents stated that the following experiences had complicated grief coping: additional losses in their family or social network; not being able to share emotions with their partner; when they perceived that friends, relatives, or colleagues lacked empathy or patience; when they felt challenging demands from employers at a too early stage. SIGNIFICANCE OF RESULTS: This study contributes to the understanding of parents' grief experiences and what has facilitated or complicated their coping with grief, which can help health care professionals and others improve bereavement support services.
Pohlkamp L; Sveen J; Kreicbergs U; Lövgren M
Palliative and Supportive Care
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/10.1017/s1478951520001212" target="_blank" rel="noreferrer noopener">10.1017/s1478951520001212</a>
Definitely Mixed Feelings: The Effect of COVID-19 on Bereavement in Parents of Children Who Died of Cancer
bereavement; Bereavement; Female; Humans; Male; Parents/psychology; Attitude to Death; Adaptation Psychological; grief; Attitude to Death; pediatric cancer; bereaved parents; Neoplasms; Neoplasms; Adaptation Psychological/physiology; Parents -- Psychosocial Factors; Disease Outbreaks; Pandemics; Covid-19; Bereavement; Coronavirus Infections/psychology; Pneumonia Viral/psychology; Arthritis Impact Measurement Scales; Coronavirus Infections -- Psychosocial Factors; Pneumonia Viral -- Psychosocial Factors; Ways of Coping Questionnaire
Context: Coronavirus disease 2019 (COVID-19) has impacted most elements of daily life, including the provision of support after a child's death and the experience of parental bereavement.Objectives: This study aims to examine ways in which COVID-19 has affected the bereavement experiences of parents whose children died of cancer before the pandemic.Methods: Parents who participated in a survey-based study examining the early grief experience were invited to complete a semistructured interview. During the interview, which focused on examining the current support for parents and other family members within the first several years after the child's death, participants were asked how COVID-19 has impacted their life and bereavement.Results: Fifteen of 33 eligible parents completed the interview; 14 were white and non-Hispanic, five were males. Parents participated an average of 19 (range 12-34) months after their child's death. COVID-19 was addressed in 13 interviews. Eleven codes were used to describe interview segments; the most commonly used codes were change in support, no effect, familiarity with uncertainty/ability to cope, and change in contact with care/research team.Conclusion: Parents identified multiple and variable ways-both positive, negative, and neutral-how COVID-19 has affected their bereavement. Many parents commented on feeling more isolated because of the inability to connect with family or attend in-person support groups, whereas others acknowledged their experience has made them uniquely positioned to cope with the uncertainty of the current situation. Clinicians must find innovative ways to connect with and support bereaved parents during this unique time.
Helton G; Wolfe J; Snaman JM
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2020.08.035" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.08.035</a>
Parental Perceptions of Hospital-Based Bereavement Support Following a Child's Death from Cancer: Room for Improvement
Bereavement; Grief; Parents; Childhood Cancer; Bereavement Support
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
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2020.11.012" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.11.012</a>
The Marital Implications of Bereavement: Child Death and Intimate Partner Violence in West and Central Africa
Child; Adolescent; Adult; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Parents/psychology; Middle Aged; Young Adult; Risk Factors; Child Mortality; Bereavement; Child mortality; Intimate partner violence; West and Central Africa; Africa Central; Africa Western; Intimate Partner Violence/statistics & numerical data; Marriage/statistics & numerical data
In high-mortality contexts, research examining the effects of child mortality has focused almost exclusively on couples' fertility responses while overlooking other potential family consequences. Using nationally representative survey data from 13 West and Central African countries, we estimate multilevel discrete-time hazard models to determine how women's risk of intimate partner violence (IPV) varies with the death of children. We assess heterogeneity in this association across two surrounding circumstances: children's age at death and regional prevalence of child bereavement. Findings indicate that the risk of IPV initiation rises with the death of children under age 5-for whom women are most intensely responsible-but not with the death of older children. The effect of young child bereavement is most pronounced in regions where it is least prevalent among mothers-a finding not explained by concomitant regional variation in gender inequality, family norms, and infrastructural development. These findings highlight the importance of child mortality for family outcomes beyond fertility in the African context and demonstrate the prominent role of the broader mortality context in shaping these implications.
Weitzman A; Smith-Greenaway E
Demography
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/10.1007/s13524-019-00846-7" target="_blank" rel="noreferrer noopener">10.1007/s13524-019-00846-7</a>
Continuing Bonds Following Stillbirth: Protective and Risk Factors Associated with Parental Bereavement Adaptation
Bereavement; Risk Factors
To investigate any association between expressions of parents' continuing bond with their stillborn baby and bereavement adaptation. Continuing bonds theory suggests that bereaved parents adapt to the loss of their child by sharing and transforming mental representations of the child, allowing them to be integrated into parents' everyday lives. Little is known about the mental health benefits of expressing continuing bonds following stillbirth. This study examined any association between aspects of parents' relationship with their stillborn baby, social support for the relationship, and bereavement adaptation. Cross-sectional questionnaire study. Parents of stillborn babies (N=170) completed an online questionnaire examining engagement in continuing bonds expressions; characteristics of parents' relationship with their stillborn baby and their experience of sharing it; social support, and meaning-making. Measures of mental health were included to quantify bereavement adaptation. Regression analyses showed that time since death, meaning-making, engaging with nature, and legacy building are positively linked to bereavement adaptation. Risk factors included inadequate social support for the relationship, a greater desire to share it more freely, an increased sense of integration with baby, and societal pressure to move on. Key aspects of parents' ongoing relationship with their stillborn baby and the social context are related to bereavement adaptation.
Jones EE; Crawley R; Brierley-Jones L; Kenny C
Journal of Reproductive & Infant Psychology
2023
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/10.1080/02646838.2021.1972951" target="_blank" rel="noreferrer noopener">10.1080/02646838.2021.1972951</a>
Taking Memory Making to the Next Level with the Use of Resin
Memory; resin; Artifact; Bereavement; Bereavement support; Child; conference abstract; controlled study; foot; grief; hair; Hospice; Human; Memory; nut; Palliative Therapy; photography; sibling; worker
Background Memory making is the process of creating mementos of a child with a life-limiting condition, who may be at or near end of life, providing a tangible and visual connection to the child who has died. Acorns memory making work already included sensitive and specialist use of artwork, hand and footprints, hand casting and photographs of children post death. Aim(s) 1. To share how effective Resin can be as a memory making tool, capturing very personal images and mementoes for parents and carers pre- and post- the loss of their child. 2. To understand the positive impact effective memory making has on families, pre- and post- bereavement. Methods * June. The use of Resin in memory making was identified as an area of interest by a Clinical Support Worker leading on Play and Activity. * July - Sept. Working group established bringing together key palliative care professionals across the hospice who were delivering memory making and keen to develop the service further. * Sept. - Dec. Introduced the use of Resin into memory making work. Results 1. After seeing the results of the Resin art, parents are increasingly requesting ongoing memory making through the last few days of their children's lives; using Resin as a tool supports this very specialised area of work we do across hospices. 2. Parents experienced an overwhelmingly positive impact from memory making, displaying the Resin-based artefacts created in pride of place in their homes. 3. Parent and siblings referring to the impact the memory making process and ongoing value of the Resin created items in post bereavement support sessions. Conclusions Our journey with using Resin has been a progressive one and following feedback from parents we know it has positively impacted on their bereavement experience. The Resin work has been led by parent and sibling engagement who find the creative work we do with them during the end of life phase and after their loss supports them through their grief. Resin is so adaptable therefore the memory- making teams can capture pictures of children, fingerprints, hand and foot prints and locks of hair in ornaments, necklaces, key rings. We hope that by sharing our work in this area other memory making teams across the palliative care sector can consider how they too may like to add this as another optional tool for their memory making work.
Aspinall E; Kelly M
BMJ Supportive and Palliative Care
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/10.1136/spcare-2022-HUNC.206" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.206</a>