Community-Based Pediatric Palliative Care: How Services Support Children's and Families' Quality of Life
mental health; child; article; controlled study; human; male; palliative therapy; pain; sibling; spiritual care; quality of life; interview; interpersonal communication; cost effectiveness analysis; adolescent; socialization; caregiver; convenience sample; bereavement support; family; clinician; participatory research; self care; psychological well-being; physical well-being; disease management; community; community integration
Background: The Massachusetts Department of Public Health's Pediatric Palliative Care Network (PPCN) provides Community-Based Pediatric Palliative Care (CBPPC) to children with life-limiting conditions and their families. CBPPC services aim to improve children and families' quality of life (QOL). <br/>Objective(s): To identify perceived domains of QOL important for children and families and to understand whether and how CBPPC supports QOL. <br/>Design(s): A community-based participatory research framework was used to develop recruitment and data collection materials for eight focus groups and seven interviews. Collected data were transcribed and analyzed with an inductive approach. Setting/Subjects: A convenience sample of 33 PPCN caregivers, 20 providers, and seven key informants, including policymakers, community organizations, and hospital-based clinicians, were interviewed virtually in the United States. Measurements: Perceived QOL domains for children and families, respectively, and perceived impact of CBPPC services on QOL. <br/>Result(s): Reported QOL domains described as important for children were socialization/community integration and accessibility; expression/play; and physical wellness. Control or autonomy, psycho-emotional wellness, and self-care were identified as important for families. Clinical services were described as "integral to mental health" through offered spiritual support; advocacy in the community; and education. PPCN's integrative services were noted as distractions from pain and helped improve communication and bonding. Sibling support and bereavement care were also mentioned as impactful on QOL. <br/>Conclusion(s): Family-centered CBPPC was described as supportive of children's and families' QOL. Future studies should consider using population-based QOL measures, leveraging the QOL domains identified through this analysis and other outcome measures in a cost-effectiveness analysis.
Wang Y; Ferreira E; Savageau J; Beitman A; Young M; Gabovitch E; Merriam G; Jozan A; Padgett K; Bateman S
Journal of 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/10.1089/jpm.2023.0147" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0147</a>
Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic
child; Canada; terminal care; article; controlled study; female; human; male; chronic disease; social support; palliative therapy; interview; parental attitude; health care policy; health care access; health service; adolescent; infant; physical activity; public health; qualitative research; coping behavior; coronavirus disease 2019; risk assessment; health status; personal experience; bereavement support; health care facility; family support; pandemic; infection control
Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods: In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children's hospital in eastern Canada. Results: Twenty bereaved parents, consisting of 12 mothers and 8 fathers, participated in individual interviews between January and December 2021. Findings identified impacts of the COVID-19 pandemic on children's end-of-life care, experiences in hospital and at home, and family bereavement processes and experiences. Most parents experienced substantial worry about their child's physical status and the additional risk of COVID-19 given her/his vulnerability. Parents also struggled to navigate public health protocols as they attended to their child's needs and their family's desire for engagement and support. Key facilitators that helped families cope included a strong network of formal and informal supports. Conclusion: Implications highlight the need to critically reflect on pandemic care in the context of co-occurring end-of-life processes. Findings amplify the need to balance necessary infection control practices with access to essential supports for families.
Rapoport A; Nicholas DB; Zulla RT
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/s12904-023-01280-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01280-8</a>
Palliative Care in Children with Inherited Metabolic Diseases: Why does it matter?
child; article; cohort analysis; female; hospital admission; human; male; retrospective study; palliative therapy; intensive care; hospitalization; follow up; medical device; school child; home care; enteric feeding; patient referral; neurologic disease; noninvasive ventilation; communication disorder; motor dysfunction; drug combination; metabolic disorder; emergency ward; symptom assessment; place of death; bereavement support; emotional support; respiratory equipment
Background: Inherited metabolic diseases (IMD) bring considerable burden on the child and family. Challenging areas for health care include the identification of distressing symptoms, prognostic uncertainty, and bereavement. Literature regarding the impact of paediatric palliative care (PPC) is scarce. Objective: This study aims to evaluate children with IMD referred to a PPC team (PPCT) and to analyse its impact on home care, decision to limit treatment (DLT), use of hospital resources (emergency department admissions - EDA, hospital admissions - HA, intensive care admissions - ICA) and end of life support. Methods: Retrospective cohort study of children with IMD referred to a specialized PPCT (2016-2022). We assessed clinical data: symptoms control, time of referral and length of the follow-up period, DLT, device dependency, use of hospital resources prior to and after referral, place of death and end-of-life support. Results: Fifteen children with IMD were referred to PPCT (8% of total referrals), with median age of 7 years (4 months - 17 years); 53% female. All children were non or pre-verbal. Most prevalent symptoms were neurologic and motor impairment (100%), respiratory and gastrointestinal (75%). 80% had tube feeding, 90% had some respiratory device (non-invasive ventilation in 23%). All children had multidrug use, with a mean of 6 drugs per child (2-9). 73% had home PPC and 80% had DLT planned. Nine children died (78% in hospital), after a mean of 17 months of follow-up (2 months to 4 years), all with DLT planned. 67% had support from PPCT at the end of life. All these families received emotional support. Decrease in EDA (10 vs 2) was noticed before and after PPCT. No impact was seen in HA and ICA (6 vs 5 and 1 vs 1, respectively) and there was a longer mean of hospitalisation stay (15 vs 32 days). Conclusion: Our cohort includes a group of children with severe, complex and neurodegenerative IMD. They need multiple medications for symptoms control, are highly dependent on medical devices and consume significant healthcare resources. Communication impairment adds complexity being a major barrier to symptom assessment. PPCT referral allowed home support, anticipated care plans development with end of life and bereavement support, as well as a tendency towards a reduction in EDA. These findings reinforce the need for holistic approach to identify and address the PPC needs of children with IMD.
Pereira MJ; Nogueira A; Grilo E; Ferreira S; Diogo L; Cancelinha C
Endocrine, Metabolic and Immune Disorders - Drug Targets
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/10.2174/0118715303278702231019093844" target="_blank" rel="noreferrer noopener">10.2174/0118715303278702231019093844</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>
Sharing care at the End of life for adolescent patients with neuro-disability: A case series
child; Adolescent; adult; female; hospital admission; human; male; palliative therapy; patient care; terminal care; young adult; clinical article; hospital discharge; groups by age; adolescent; deterioration; conference abstract; learning; adulthood; case study; neurodisability; bereavement support; community health nursing; family support; health hazard
Background Adolescents with long term conditions are recognised to have unique needs and to experience particular health risks as they transfer to adult services. Some young people with complex neuro-disability may live years following transfer to adult services; for others however, reaching adulthood coincides with a significant deterioration in their health. Identifying the best team to support the patient in this situation can be controversial. Community and hospital adult palliative care teams may have an important role to play in supporting these patients, yet clinicians may lack experience working with this age group or managing the symptoms associated with paediatric neurodisability. We present reflections from a series of 6 young adults who received shared-care from adult and paediatric palliative teams and raise discussion about the strengths and learning needs of the different teams involved. Intervention Over a period of 2 years, patients who were between the age of 15 and 19 years and experiencing a significant deterioration in their health were referred to the children's palliative care team for the North East North Cumbria region. Where appropriate, the children's team identified a local adult palliative care team and established a model of shared-care with this team. Findings Across the region 3 adult hospital palliative liaison teams and 4 adult community palliative care teams were involved in shared end of life care. Cross-team debriefs identified benefits including * Improved continuity of care * Access to out of hours support * Avoiding hospital admission/Safe discharge planning * Confidence with medication for symptom management * Access to local family support and bereavement services * Building relationships for future joint working * Support for adult and children's community nursing teams Conclusion Sharing end of life care between adult and paediatric palliative care services can improve the experience of young adults and their families.
Elverson J; Aspey H; Bond E; Mackerness C; Hoskins R; Shiell A
BMJ Supportive 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/10.1136/spcare-2023-PCC.196" target="_blank" rel="noreferrer noopener">10.1136/spcare-2023-PCC.196</a>
Specialized pediatric palliative care services in pediatric hematopoietic stem cell transplant centers
hematopoietic stem cell transplantation; palliative therapy; advance care planning; article; bereavement counseling; bereavement support; cause of death; child; controlled study; descriptive research; ethics; female; Hematopoietic Stem Cells; home; hospice; hospital; human; in-hospital mortality; major clinical study; male; mortality; Palliative Care; patient referral; pediatric intensive care unit; place of death; relapse; retrospective study; spiritual care; Stem Cell Transplantation
Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study aimed to provide insight into current data on the place and cause of death of transplanted children, the available specialized pediatric palliative care services (SPPCS), and what services HSCT professionals feel the SPPCS team should provide. First, a retrospective database analysis on the place and cause of death of transplanted pediatric HSCT patients was performed. Second, a survey was performed addressing the availability of and views on SPPCS among HSCT professionals. Database analysis included 233 patients of whom the majority died in-hospital: 38% in the pediatric intensive care unit, 20% in HSCT units, 17% in other hospitals, and 14% at home or in a hospice (11% unknown). For the survey, 98 HSCT professionals from 54 centers participated. Nearly all professionals indicated that HSCT patients should have access to SPPCS, especially for pain management, but less than half routinely referred to this service at an early stage. We, therefore, advise HSCT teams to integrate advance care planning for pediatric HSCT patients actively, ideally from diagnosis, to ensure timely SPPCS involvement and maximize end-of-life preparation.Copyright © 2021 by the authors. Licensee MDPI, Basel, Switzerland.
Mekelenkamp H; Schroder T; Trigoso E; Hutt D; Galimard JE; Kozijn A; Dalissier A; Gjergji M; Liptrott S; Kenyon M; Murray J; Corbacioglu S; Bader P
Children
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children8080615" target="_blank" rel="noreferrer noopener">10.3390/children8080615</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>
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>
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>
Content Analysis of Multifaceted Needs for Improving the Quality of Pediatric Palliative Care Among Parents of Children With Life-threatening Conditions
South Korea; advance care planning; article; bereavement; bereavement support; care behavior; child; clinical article; content analysis; controlled study; diagnosis related group; female; human; male; palliative therapy; qualitative research; semi structured interview; spiritual care
This study aimed to identify parental needs for pediatric palliative care and obtain their opinions on developing pediatric palliative care in South Korea. This qualitative research design used inductive and deductive methods. The data were collected through semistructured interviews. A total of 6 parents actively caring for a child with life-threatening conditions and 7 bereaved parents participated in this study. A total of 707 significant statements, 43 subthemes, and 16 themes according to 6 structured matrices (advance care planning and symptom control, psychological and spiritual care, supporting everyday lives, end-of-life care and bereavement support, delivery model of pediatric palliative care, and unmet needs within current services) on the care and bereavement experiences of parents of children with life-threatening conditions were derived. Palliative care for children is a multidisciplinary approach to evaluate, prevent, and manage multifaceted symptoms and to support children with life-threatening conditions and their families. Our findings suggest that parents of children with life-threatening conditions in South Korea present multidimensional needs across the diagnostic groups and the illness trajectories and inform policy makers and health care professionals to design a pediatric palliative care delivery model. Further studies examining the unmet needs are required to enhance the quality of pediatric palliative care. Copyright © 2022 by The Hospice and Palliative Nurses Association. All rights reserved.
Cho-Hee K; Min-Sun K; Yi-Ji M; Hee-Young S; Myung-Nam L; Kyung-Ah K
Journal of Hospice and Palliative Nursing
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/10.1097/NJH.0000000000000908" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000908</a>
The Dutch Multidisciplinary Clinical Practice Guideline for Pediatric Palliative Care
Netherlands; advance care planning; bereavement support; child; clinical practice; conference abstract; controlled study; female; human; male; palliative therapy; practice guideline; randomized controlled trial (topic); shared decision making; systematic review
Background and Aims: Pediatric palliative care is concerned with relief of suffering of all children with a life threatening disease and their families in all domains (physical, psychological, social and spiritual). This includes pediatric oncology patients. In 2013, the first Dutch multidisciplinary clinical practice guideline for pediatric palliative care was developed, providing recommendations on relief of symptoms, decision-making and organization of care. Evaluation of the guideline revealed a need for revision of the recommendations and inclusion of new recommendations on E-Poster Topics such as psychosocial and bereavement care, advance care planning and shared decision-making. The aim of this research is to improve provision of pediatric palliative care in the Netherlands by developing an updated version of the Dutch Pediatric Palliative Care guideline. Method(s): A multidisciplinary guideline panel reviewed literature on pediatric palliative care by systematic literature searches. The GRADE methodology was used to grade the evidence and to formulate recommendations. Recommendations were formulated and refined based on the evidence, clinical expertise, and patient values. For those E-Poster Topics where no evidence was available, recommendations were based on other guidelines, clinical expertise and patient values. Result(s): The updated systematic literature search identified 14 randomized controlled trials and 15 systematic reviews that prompted refinement of recommendations. For 27 out of 42 formulated clinical questions, no evidence was found. This revealed major gaps in knowledge on pediatric palliative care. Based on evidence (if available), clinical expertise and patient values, more than 100 recommendations on various E-Poster Topics in pediatric palliative care were generated. Conclusion(s): The updated guideline uses existing evidence and national expertise to develop transparent and easy-to-use recommendations to facilitate provision of high quality pediatric palliative care. The guideline promotes interdisciplinary collaboration and opens opportunities for international research into the identified knowledge gaps to further improve pediatric palliative care.
Van Teunenbroek K; Mulder R; Kremer L; Borggreve B; Verhagen AAE; Michiels E
Pediatric Blood and Cancer
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/10.1002/pbc.29952" target="_blank" rel="noreferrer noopener">10.1002/pbc.29952</a>
Reimagining Perinatal Palliative Care: A Broader Role for Support in the Face of Uncertainty
female; grief; ethics; human; perinatal care; uncertainty; article; palliative therapy; comfort; fetus; patient referral; infant; bereavement support; decision making
Perinatal medicine is confronted by a growing number of complex fetal conditions that can be diagnosed prenatally. The evolution of potentially life-prolonging interventions for the baby before and after birth contributes to prognostic uncertainty. For clinicians who counsel families in these circumstances, determining which ones might benefit from early palliative care referral can be challenging. We assert that all women carrying a fetus diagnosed with a life-threatening condition for which comfort-focused care at birth is one ethically reasonable option ought to be offered palliative care support prenatally, regardless of the chosen plan of care. Early palliative care support can contribute to informed decision making, enhance psychological and grief support, and provide opportunities for care planning that includes ways to respect and honor the life of the fetus or baby, however long it may be.
Lord S; Williams R; Pollard L; Ives-Baine L; Wilson C; Goodman K; Rapoport A
Journal of 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/10.1177/08258597221098496" target="_blank" rel="noreferrer noopener">10.1177/08258597221098496</a>
Parental Perceptions of Hospital-Based Bereavement Support Following a Child's Death From Cancer: Room for Improvement
bereavement; bereavement support; Child; childhood cancer; Grief; Hospitals; Neoplasms/therapy; Parents; Perception
CONTEXT: The death of a child from cancer is a devastating event, placing bereaved parents at risk for both physical and psychosocial morbidities. Despite growing awareness of these outcomes and increased hospital-based support, bereaved parents continue to express a desire for additional assistance. OBJECTIVES: We examined parental perceptions of bereavement support from the clinical teams and institution and suggested modifications to hospital support strategies. METHODS: We explored the answers to four questions on the bereavement support provided from the care team and institutional mailings from a larger survey, querying parents of children who died from cancer 6 to 24 months prior to participation. Answers were Likert scale based with additional free-text responses. RESULTS: Forty-nine parents completed the survey (response rate 36%). The respondents were predominantly white (N = 43, 88%), female (N = 32, 65%), and non-Hispanic/Latino (N = 43, 88%). The mean length of time from child's death to completion was 13 months. Twenty-seven (55%) and 26 (53%) parents indicated that contact with care team and mailings, respectively, were at least a little helpful in their grief experience. In free-text responses, parents identified support outside the hospital (28 respondents), groups and events hosted by the hospital or hospice (8), contact with care team (3), and hospital mailings (1) as the most helpful. Findings support modifications to hospital support strategies. CONCLUSIONS: Bereaved parents request additional supportive services. Using the parents' perspective and recommendations, we outline options to augment support and provide a variety of supportive resources for bereaved parents to access in their own time.
Helton G; Morris SE; Dole OR; Wolfe J; Snaman JM
J Pain Symptom Manage
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2020.11.012" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.11.012</a>
Reconsidering early parental grief following the death of a child from cancer: a new framework for future research and bereavement support
grief; parental grief; pediatric oncology; bereavement; bereavement support
Purpose: Parents of children that die from cancer are at increased risk of significant long-term psychosocial and physical morbidities. Less, however, is known about the experience of parents early in the grief process. Currently used frameworks and instruments used to understand and assess outcomes in parents early in the grief experience are inadequate and may serve to pathologize the normal grief response. Method(s): Through review of the literature, previously conducted qualitative work, and extensive clinical experience working with bereaved parents, we developed a new framework for understanding, assessing, and studying parental grief during the first 2 years following the death of a child from cancer. Result(s): Our novel longitudinal framework hypothesizes that short- and long-term psychosocial sequalae in parents following the death of a child from cancer depend not only on pre-death factors but on the support present through the disease experience and the oscillation between protective factors and risk factors in the post-death period. We further hypothesize that protective factors and risk factors may be modifiable, making them key potential targets for supportive interventions aimed at augmenting protective factors and diminishing the effect of risk factors. Conclusion(s): This is a new framework for understanding and assessing the grief experience of parents within the first 2 years of a child's death. Many questions about how best to support parents following the death of a child from cancer remain providing ample opportunities for future research and development of interventions to improve both short- and long-term outcomes in bereaved parents. Copyright © 2019, Springer-Verlag GmbH Germany, part of Springer Nature.
Snaman J; Morris S E; Rosenberg A R; Holder R; Baker J; Wolfe J
Supportive Care in Cancer
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00520-019-05249-3" target="_blank" rel="noreferrer noopener">10.1007/s00520-019-05249-3</a>
National Children's Hospitals Bereavement Network standards for supporting families following the death of a child
bereavement; bereavement support; child health; clinical; death; end-of-life care; grief; parents
In England, a child death review process must be undertaken when a child dies, regardless of the cause of death. Scotland and Wales have their own version of the child death review process, while it is the author's understanding that Northern Ireland are still developing their process. An important aspect of this process is family engagement and bereavement support. This article is an introduction to the bereavement support standards developed by the National Children's Hospitals Bereavement Network, a newly formed group of specialist children's nurses and allied health professionals interested in bereavement care. These standards translate the statutory requirements into practical guidance for healthcare professionals working in children's hospitals in the UK or district general hospitals that offer services for children and families. They also apply to NHS trusts that care for children and need to develop a local policy and workforce with the appropriate skills to provide bereavement care, thereby improving the experiences of families and healthcare professionals. The standards would also be applicable to other NHS trusts and healthcare services in the UK who want to develop an approach to bereavement care and support for families. Copyright © 2020 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.
Edwards F
Nursing children and young people
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/10.7748/ncyp.2020.e1336" target="_blank" rel="noreferrer noopener">10.7748/ncyp.2020.e1336</a>
Palliative care in an underserved community: Striving and thriving
awareness; bereavement support; bone marrow; cancer patient; Caribbean; child; childhood cancer; conference abstract; congenital malformation; coordination compound; ethnic group; Europe; female; heart; Hispanic; hospice; hospital patient; human; Japan; kidney; liver; major clinical study; male; medicaid; memory; Middle East; music therapy; neonatal intensive care unit; newborn; nursing education; pain; palliative therapy; pastoral care; perception; posthumous care; resident; sibling; social work; terminal care; terminally ill patient
Program Goals: Our program is uniquely positioned in a safety net hospital that serves as a large tertiary referral center for pediatric transplant, trauma and heart failure as well as being an international catchment area for the southern hemisphere. Meeting the palliative care needs of our medically complex and chronically ill children proves to be a tremendous challenge, oftentimes made worse by the fact that our most technology dependent children may be uninsured with families that have little to no resources. Despite the complexity of our population and our many financial and socioeconomic constraints, we have a burgeoning Pediatric Palliative Care (PPC) Service that strives to provide quality independent of our patients' circumstances. Evaluation: In 2008, we sought to institute PPC without having dedicated FTE's. By 2013, we had convened a consistent team with existing staff and improved the awareness and importance of palliative care. Our program has experienced significant growth and now consists of one full time PPC Nurse, one volunteer faculty physician, child life, music therapy, behavioral health, pastoral care, social work and volunteer services. In 2016, our team received 176 consults - a 76% increase from our initial efforts in 2013. The majority were for Pediatric Transplant patients including Bone Marrow, Cardiac, Renal, Liver, Intestinal and Multivisceral, accounting for 23% of our total. Pediatric Oncology was our next most frequent category at 20%. The third most common consultation was for complex congenital malformations and syndromes from the Neonatal ICU at 11%. 79% of our consults consisted of ethnic minorities (Black and Hispanic). Historically, our institution serves 80% Medicaid and 3% unfunded patients. Approximately 20% of our patient population consists of international referrals and in 2016 our consults included patients from the Middle East, Caribbean, South and Central America, Europe and Japan. Our services to patients include coordination of complex care, discharges to hospice, pain and symptom management, family and sibling support, field trips and even meal, transportation and gym access vouchers. We have facilitated international medical transportation of terminally ill children back to their countries of origin to provide a peaceful death surrounded by loved ones in a familiar environment. From our cumulative PPC census, there were 90 deaths in 2016. All members of our team assisted with inpatient end of life care, memory building, bereavement services and even funeral arrangements and expenses where possible.
Alladin A R; Juanico K; Webster-Carrion A; Nares M; Cantwell G P
Pediatrics
2018
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).
Preparing for Good Grief: Grief and Loss in the Hospice and Palliative Context (P07)
bereavement support; child; complicated grief; conference abstract; exercise; hospice; human; learning; palliative therapy; professional practice; program development; risk factor; survivor; videorecording
Objectives: * Describe state of current science and theory related to grief and bereavement. * Discuss variations of grief and strategies to support bereaved individuals. * Identify best practices to support healthy grief in hospice and palliative care contexts. * Identify special needs of unique populations across the lifespan (e.g., children, teens), persons with intellectual disabilities, those experiencing unexpected death of a family member or close friend, or those having complicated grief. * Identify program services and opportunities that utilize current best practices and knowledge within their own agency. Grief and bereavement are universal human experiences, and inevitable outcomes for those who lose a family member or close friend. For hospice and palliative care providers, understanding the complexities of this universal yet individualized experience, and providing support to the bereaved is a critical part of our field. This practical, interactive workshop will provide an overview of current theories, best practices, and approaches to support healthy grief and manage loss in a modern society. Through a variety of learning exercises, including discussion of field experience and current research, case studies, video exercises, and reflections, this presentation will discuss the complexities within the grief experience in hospice and palliative care. Phases of bereavement care needs, including the initial diagnosis, grieving through the disease process, becoming eligible for hospice services, support through the ongoing trajectory of grief, and facilitating access to community supports, will be discussed. Implications for hospice and palliative care inter-professional practice, program planning, and community advocacy will be provided. Special circumstances that challenge bereavement will be identified, including children, teens, survivors of traumatic loss, and risk factors for Prolonged Grief Disorder (PGD). Concerns that can particularly be addressed in the palliative context to support healthy grieving, and gaps in knowledge and services will also be highlighted.
Remke S S; Shukraft A E; Supiano K P; Wladkowski S P
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.2019.12.018" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.018</a>
Grief and Bereavement Support for Families and Healthcare Professionals as Part of Integrated Care in Pediatric/Neonatal Intensive Care Units around the World (TH340A)
bereavement support; child; conference abstract; controlled study; convenience sample; demography; female; financial management; gender; health care personnel; high income country; human; male; neonatal intensive care unit; newborn; newborn death; palliative therapy; patient coding; pediatric intensive care unit; perception; prospective study; questionnaire; statistical significance; World Bank
Objectives: * Recognize how PICUs/NICUs implement GBS IPPC recommendations. * Describe how PICUs/NICUs' resource influence their GBS care provision as related to IPPC recommendations. Original Research Background: Grief and bereavement support (GBS) is important for the wellbeing and functioning of patients, families, and healthcare professionals (HCPs) and is part of the Integrated Model of Care (IMOC) in which ICU personnel address critical and palliative care (PC) needs concurrently. The Initiative for Pediatric Palliative Care (IPPC) guidelines can build PC capacity. Identifying existing PC resources/competencies amongst potential IPPC adopters maximizes implementation effectiveness. Research Objectives: We assessed if PICUs/NICUs implement GBS IPPC recommendations and if units' resources shape care provision.
Grunauer M; Bustamante G; Zambrano K
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.2019.12.077" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.077</a>
Spiritual needs and communicating about death in nonreligious theistic families in pediatric palliative care: A qualitative study
article; bereavement support; child; China; comfort; controlled study; death education; hematology; human; palliative therapy; pediatrics; qualitative research; religion; spiritual care; support group; terminally ill patient
Background: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion. Aim: To understand nonreligious theistic parents’ spirituality and to explore how parents discuss death with their terminally ill children in mainland China. Design: Qualitative study. Setting/participants: This study was conducted in the hematology oncology center at Beijing Children’s Hospital. Participants in this study included 16 bereaved parents. Results: Participants described themselves as nonreligious but showed a tendency toward a particular religion. Parents sought religious support in the face of the life-threatening conditions that affected their child and regarded the religious belief as an important way to get psychological and spiritual comfort after experiencing the death of their child. Religious support could partially address parents’ spiritual needs. Parents’ spiritual needs still require other supports such as bereavement services, death education, and family support groups. Some parents stated that it was difficult to find a way to discuss death with their children. For patients who come from nonreligious theistic families, their understanding of death was more complex and may be related to atheism. Conclusion: Religious support could be an element of spiritual support for nonreligious theistic parents of terminally ill children. Multiple strategies including religious supports and nonreligious supports should be rationally integrated into spiritual support of nonreligious theistic family. Patient’s personal belief in death should be assessed before discussing death with them.
Cai S; Guo Q; Luo Y; Zhou Y; Abbas A; Zhou X; Peng X
Palliative Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0269216319896747" target="_blank" rel="noreferrer noopener">10.1177/0269216319896747</a>
The Nesting Dolls Design: A Methodology for the Recruitment of Bereaved Parents for Partnership Activities Related to Palliative Care and Bereavement Support in Paediatric Psycho-Oncology
52315-07-8 (cypermethrin); 65731-84-2 (cypermethrin); 66841-24-5 (cypermethrin); 67375-30-8 (cypermethrin); bereavement support; child; clinical article; clinician; conference abstract; confidentiality; content analysis; controlled study; cypermethrin; death; evaluation research; female; filter; follow up; human; information center; intensive care; interview; male; neonatology; nesting; palliative therapy; pediatrics; psycho-oncology; questionnaire; research ethics; writing
Objectives: 1) Fill the knowledge gaps about best practices related to collaboration with bereaved families in projects related to end-of-life practices, palliative care and parental bereavement in paediatrics. 2) Identify best practices for establishing safe partnership communication with bereaved families.
Bourque C J; Cardinal G; Dumont E; Sultan S
Journal of Pain and Symptom Management
2018
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.2018.10.286" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.286</a>
Integrating palliative care into the community: the role of hospices and schools
article; bereavement support; capacity building; child; curriculum; female; hospice care; human; human experiment; male; palliative therapy; primary school; public health; Scotland
OBJECTIVES: Palliative care services have, up to now, paid insufficient attention to social aspects of dying and bereavement and this has affected how patients and their families experience end of life and bereavement within their communities. New public health approaches to palliative care offer a different way forward by seeking to develop communities that support death and bereavement. Such approaches are now a priority for the majority of hospices in the UK and work with schools has been identified as a key area of work. Practice that engages schools and children on issues concerning end-of-life care is, however, underdeveloped and underdocumented. This research explored the role of hospices in working with schools to promote education and support around end-of-life and bereavement experiences.
Paul S; Cree V E; Murray S A
BMJ Supportive & Palliative Care
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjspcare-2015-001092" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2015-001092</a>
Efficacy of the Paediatrics Palliative Care Team of Murcia according to the experience of the parents
death; article; child; female; human; male; palliative therapy; retrospective study; controlled study; human experiment; pediatrics; terminal care; shared decision making; satisfaction; Palliative care; newborn; questionnaire; pediatrician; bereavement support; End-of-life care; Improvements; observational study; Paediatric; Parental perspectives; Questionnaire; Survey
Introduction: The care at the end of children's lives must be sensitive to the needs of the child and their family. An understanding of the illness is required from the perspective of parents faced with the death of their child, in order to improve quality and guide the development of end-of-life care in Paediatrics. Method(s): A retrospective observational study was conducted between June 2014 and June 2017 using a questionnaire, to assess the needs, experiences, and satisfaction with the care received, from a sample of parents who lost a child due to a foreseeable cause. Three different study groups were formed based on the team responsible for end-of-life care, and an analysis was carried out on the differences between the group treated by the paediatric palliative care team, the group attended by non-palliative paediatricians, and the neonatal group. Result(s): Of the 80 eligible families, 64 could be contacted, and 28 (43.8%) finally completed the questionnaire. Our study shows positive experiences and high satisfaction of parents with the care received at the end of their child's life. The highest scores in experiences and satisfaction were given by the parents of the children served by the paediatric palliative care team, with statistically significant differences in family support, communication, shared decision making, and bereavement support (P < .05). Conclusion(s): Parents are satisfied with the care received at the end of their children's lives, but the intervention of a specific paediatric palliative care team improves the quality of care at the end of life in paediatrics. Copyright © 2019
Plaza Fornieles M; Garcia-Marcos B P; Galera Minarro A M; Barbieri G; Bellavia N; Bermudez Cortes M D M; Navarro M A
Anales de Pediatria.
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.anpedi.2019.07.001" target="_blank" rel="noreferrer noopener">10.1016/j.anpedi.2019.07.001</a>
The Role of Child Life Specialists in Providing Culturally Responsive Palliative Care to the Mexican Origin Community
human; palliative therapy; pediatric patient; coping behavior; terminal care; bereavement; grief; medical specialist; health care system; bereavement support; breathing exercise; child life specialist; communication skill; cultural anthropology; family centered care; guided imagery; health care delivery; health personnel attitude; letter; medical procedures; Mexican; relaxation training; religion; scope of practice
Petkus J M
Journal of Palliative Medicine
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2019.0203" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0203</a>
Neonatal palliative care: A single site clinical audit
cause of death; newborn; terminal care; major clinical study; retrospective study; newborn death; hospital admission; conference abstract; human; child; female; male; social work; palliative therapy; clinical audit; speech; bereavement support; physiotherapy; gold; music therapy; nursing staff; seashore
Background: Best practice, palliative and end-of-life care (EOLC) enhances symptom management and quality-of-life for individuals who are palliative and dying, and their families. Although Gold Coast Health (GCH) has a dedicated, interdisciplinary palliative care service (including allied health) for adults, no equivalent local neonatal/paediatric service exists, highlighting inequity of access to care based on age. This project investigated allied health service usage of neonates requiring palliative and EOLC and their families in GCH. Method(s): A retrospective clinical audit was conducted to map the patient journey of all neonatal deaths within GCH between September 2013 and May 2018. Variables included: number, place and cause of death, diagnoses, number/reasons for hospital admissions, frequency and type of allied health interventions received. Result(s): 66 neonatal deaths were identified. 62 deaths occurred at GCUH, 2 elsewhere, and 2 at home. Of the 127 interventions carried out (excluding daily nursing staff) 72 were provided by acute service allied health professionals. Proportion of AH interventions included Social Work (85%), Physiotherapy (11%), Speech Pathology (3%), and Music Therapy (1%). Only 1 neonate was registered with QPPCS, however 20 received palliation. Full data will be presented. Conclusion(s): GCH requires a funded, appropriately resourced, interdisciplinary palliative care and bereavement service for neonates and children to ensure our families are provided with equitable access to evidence based, local services across the continuum of care (including in-the-home).
Gill K; Weir K; Delaney A; Moloney S; Herbert A; Noyes M; Hong T; Broadbent A; Scuffham P; Mickan S
Journal of Paediatrics and Child Health
2019
<a href="http://doi.org/10.1111/jpc.14409" target="_blank" rel="noreferrer noopener">10.1111/jpc.14409</a>
The use of a theatre workshop in developing effective communication in paediatric end of life care
child; human; terminal care; statistics; article; perception; quantitative analysis; bereavement support; communication skill; convenience sample; human experiment; questionnaire; clinical practice; registration; nursing student; learning; teaching
Being able to communicate effectively is an essential skill for all nurses. Communication in paediatric end of life care can be challenging for both the student and lecturer as it is a rare experience and challenging to teach. Innovative approaches to teaching communication skills such as role play, simulation and drama have been used; however there is a dearth of literature examining the use of drama in this specialist context. The aim of this study was to explore the effectiveness of a novel workshop in teaching transferable knowledge and skills in palliative, end of life and bereavement care communication to a convenience sample of first year pre-registration nursing students undertaking clinical skills training at a UK university. Qualitative and quantitative data were obtained from pre and post intervention questionnaires exploring student's perception of communication skills. Qualitative data were analysed thematically and quantitative data presented as standard descriptive statistics. The novel communication workshop facilitated students' exploration of how good and poor communication looks and feels and introduced aids to inform communication in clinical practice. Exposure to different learning approaches provided opportunities to both gain confidence in engaging in new learning activities and develop knowledge and skills through purposeful engagement.
Neilson S J; Reeves A
Nurse Education in Practice
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.nepr.2019.02.014" target="_blank" rel="noreferrer noopener">10.1016/j.nepr.2019.02.014</a>
A scoping review of palliative care for children in low- and middle-income countries
hospice care; analgesia; government; feasibility study; terminal care; palliative therapy; child health care; health care access; health care availability; health care personnel; health care quality; low income country; middle income country; systematic review; emotionality; psychosocial care; human; article; child; bereavement support; community program; health care need; paramedical education; pharmaceutical care
Sasaki H; Bouesseau MC; Marston J; Mori R
BMC Palliative Care
2017
<a href="http://doi.org/10.1186/s12904-017-0242-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-017-0242-8</a>
Family-focused children's end of life care in hospital and at home
end-of-life care; Bereavement support
An increasing number of children and young people require end of life care, and providing them and their families with optimum support at this time is crucial. This article describes how nurses working with children and families in home, hospital and community settings used the principles of practice development methodology to develop end of life care provision and follow-up bereavement support. It outlines the 'ways of knowing' that informed developments and how parents' priorities were kept central to the process. Finally, it discusses how the approach taken to practice development reflected the value of compassion in nursing practice.
2014-07
Parker H; Farrell M; Ryder A; Fernley K; Cox C; Farasat H; Hewitt-Taylor J
Nursing Children And Young People
2014
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).
Journal Article
<a href="http://doi.org/10.7748/ncyp.26.6.35.e451" target="_blank" rel="noreferrer">10.7748/ncyp.26.6.35.e451</a>
Children's Nurses' experiences in delivering bereavement care to children and families with life limiting conditions in the Irish context
Bereavement support; nurse; bereavement; Child; genetic transcription; hospice care; Human; Informed Consent; Ireland; Only Child; Palliative therapy; research ethics; semi structured interview; Terminal Care
Healthcare providers influence the experiences of families during end of life care and death of a child*. Nurses are best placed to provide bereavement support as they have opportunities to build therapeutic relationships through closely and frequently caring for the child and family. This relationship is essential within the delivery of bereavement care. However, there is a dearth of information on nurses' emic perspective and experiences within this area. The aim of this study was to gain a deeper understanding of the experiences of children's nurses' (RCN) in delivering bereavement care to children and their families with life limiting conditions, and what meaning they ascribe to their experience. In addition, the aim was to explore what impact provision of bereavement care had on RCN's as service providers, and what their needs were in the provision of effective, supportive, quality driven bereavement care to this population. Using a phenomenological design guided by Heideggerian approach underpinned by Ricoeur's analytical framework, seven semistructured interviews were conducted with RCN's with experience of delivering children's palliative care and bereavement care in Ireland. Interviews were taped and transcribed verbatim. Three themes were identified; 'being communicative and collaborative', 'being challenged' and 'being familiar'. These themes encompassed nurses' experiences with both families and healthcare professionals, highlighting the benefits for RCN involvement in the delivery of bereavement care to promote overall best outcomes. The findings support the role of RCN's in the delivery of bereavement care to children and families with life limiting conditions. It highlights the need for RCN's to be educated, up-skilled, supported, and included within the interdisciplinary team to deliver bereavement care. Ethical approval for the study was granted by LauraLynn Research Ethics Committee (2016). Written informed consent was obtained by all study participants.
Power S; Kelly-Horrigan M
Bmc Pregnancy And Childbirth
2017
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"></a>
Assessing the quality of bereavement care after perinatal death: development and piloting of a questionnaire to assess parents' experiences
Stillbirth; Bereavement Support; Grief; Perinatal Death; Pilot Study; Questionnaire
Understanding parents' experience of care is essential to develop high-quality perinatal bereavement services. This study aimed at developing a questionnaire to identify parents' needs and record their experience of care. The patient experience questionnaire was developed by professionals and parents, and piloted in a tertiary maternity unit. Responses were received from 58 parents. Sensitivity and kindness of staff and time spent with their baby were ranked as 'very important' by 95% of parents. Care in these areas largely met their needs (90%), although 5% of respondents stated that partners could have been more involved. Between 8% and 15% of respondents did not feel that language used at the diagnosis of fetal death was sensitive, clear and unambiguous. Parents did not always receive written information about their care (5%) or post-mortem (13%). Analysis of bereaved parents' responses identified areas for improvement including greater involvement of partners and a need for timely information. Impact statement What is already known on this subject?: Good quality bereavement care after perinatal death reduces the negative emotional, psychological and social effects for parents. Description of parents' experiences is a potential means to improve the quality of perinatal bereavement care. What do the results of this study add?: Parents' needs and experiences of care after perinatal death were recorded using a patient-experience questionnaire designed by a multi-professional team and parents. Staff behaviour, particularly sensitivity and kindness was highly valued by parents. Giving both verbal and written information could be improved. Training is needed for professionals, particularly those who come into contact with bereaved parents less frequently. What are the implications of these findings for clinical practice and/or further research?: Description of parents' priorities and views can be used to identify areas for improvement in perinatal bereavement care. Parents' views should be regularly sought and used to develop local services in an iterative process.
Aiyelaagbe E; Scott RE; Holmes V; Lane E; Heazell AEP
Journal Of Obstetrics And Gynecology
2017
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).
DOI: 10.1080/01443615.2017.1316710
End-of-life And Bereavement Care In Pediatric Intensive Care Units
Bereavement Support; Child Death; Family Interaction; Pediatric Intensive Care Unit; Child; Clinical Study; Doctor Patient Relation; Female; Health; Human; Male; Pain; Sound; Terminal Care; United States
Most childhood deaths in the United States occur in hospitals. Pediatric intensive care clinicians must anticipate and effectively treat dying children's pain and suffering and support the psychosocial and spiritual needs of families. These actions may help family members adjust to their loss, particularly bereaved parents who often experience reduced mental and physical health. Candid and compassionate communication is paramount to successful end-of-life (EOL) care as is creating an environment that fosters meaningful family interaction. EOL care in the pediatric intensive care unit is associated with challenging ethical issues, of which clinicians must maintain a sound and working understanding.
Suttle M; Jenkins T L; Tamburro R F
Pediatric Clinics Of North America
2017
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).
10.1016/j.pcl.2017.06.012
How Do Neonatal Units Support Siblings Following Loss?-a National Survey
Sibling; Bereavement Support; Counselor; Doctor Patient Relation; England; Hospice; Human; Human Experiment; Model; Neonatal Intensive Care Unit; Newborn; Newborn Death; Nurse; Psychologist; Social Welfare; Terminal Care
Background Supporting siblings following loss of an infant is increasingly recognised as an important aspect of neonatal bereavement support. The grief process in children is often complicated by feelings of loss, guilt as well insecurity about their parental wellbeing. There are some existing recommendations from both the Royal College of Paediatrics and Child Health and the British Association of Perinatal Medicine on the various aspects of family support but there is great variation in practice when it comes to supporting siblings following loss of a neonate. Aims/objectives The aim of this study was to explore the practices across all the Neonatal Intensive Care Units (NICUs) in England focussing on sibling support following neonatal loss. We studied the interventions, support systems and resources available for bereaved siblings within the neonatal service. Methodology We conducted a structured telephonic survey of all the 44 NICUs in England. A proforma was used and specific questions were asked from bereavement nurse within each neonatal service regarding resources, availability of multidisciplinary teams and written information on sibling support following neonatal loss. This study was completed over a period of 6 weeks between May and June 2016. The data was collected by the research team and analysed descriptively. Results Results from 39 out of the 44 NICUs. 34% of the units provide support for siblings after neonatal death. This was provided by a combination of counsellors, psychologists/family support nurse within the neonatal team. 60% involved external services including hospice or a charity organisation to provide long term support. Only 50% of units had any written materials or resources focussed on sibling support. 10% of the NICUs did not have an identified bereavement support/end of life care team. Conclusion This study identifies significant variation in practice across the NICUs in the country in terms of supporting siblings following neonatal death. It reiterates the need for a much more unified approach and sharing resources/good practice models across the different units. Sibling support should be an integral component of the bereavement support offered by neonatal services.
Henderson R; Minchella S; Vasudevan C
Archives Of Disease In Childhood
2017
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).
10.1136/archdischild-2017-313087.508
Neonatal Palliative Care-alice's Journey
Palliative Therapy; Bereavement; Bereavement Support; Child; Doctor Patient Relation; Holistic Care; Human; Infant; Infant Newborn; Medical Staff; Memory; Newborn; Newborn Intensive Care; Nursing Staff; Palliative Care; Patient Referral; Pilot Projects; Sibling; Terminal Care
Background: CHAS and NHS Lothian undertook a pilot project to review how joint working could enhance neonatal palliative care services' for families and staff. This case illustrates how collaborative working can enhance families' choices and experiences for their baby's end of life care. Aim: CHAS staff would work jointly with neonatal unit staff to deliver individualised, high quality palliative, end of life and bereavement care for babies', siblings and their families. Approach: When the neonatal team agreed that Alice had palliative care needs, a referral was made to CHAS.AA CHAS Family Support team member and the South East and Tayside (SEAT) Diana Children's Nurse agreed to work with the family and staff. Emotional and family support was provided and end of life wishes and choices were explored. The family were helped to capture memories and plans were made to help the family achieve their wish of taking Alice home to die. Outcomes: When neonatal intensive care was no longer in Alice's best interest, CHAS were able to offer choice and holistic care to the whole family. Alice's wider family were involved in memory making activities which provided them all with precious keepsakes and positive memories. With collaborative working between CHAS, NHS nursing staff, medical staff and the neonatal transport team, the family's wishes for end of life care which included taking Alice home to die were achieved. A Ongoing bereavement support for the family is available from CHAS. Conclusion: Collaborative working provides the opportunity for enhanced end of life care and support. With the support from CHAS, Alice was taken home to die and spent the last hour of her life in the loving care of her family for her first and last time in her own home.
Rodger E; Halkett C; Murdoch E
Palliative Medicine
2016
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).
https://doi.org/10.1177/0269216316631462