Parents' Decision-Making for their Foetus or Neonate with a Severe Congenital Heart Defect
Adult; Child; Congenital; Decision-making; Female; Fetus; Heart Defects; Humans; Infant; Male; Newborn; Parents; Pregnancy; Psychology; Qualitative Research
BACKGROUND: Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or neonate face a complex and stressful decision between termination, palliative care, or surgery. Understanding how parents make this initial treatment decision is critical for developing interventions to improve counselling for these families. METHODS: We conducted focus groups in four academic medical centres across the United States of America with a purposive sample of parents who chose termination, palliative care, or surgery for their foetus or neonate diagnosed with severe CHD. RESULTS: Ten focus groups were conducted with 56 parents (M(age) = 34 years; 80% female; 89% White). Results were constructed around three domains: decision-making approaches; values and beliefs; and decision-making challenges. Parents discussed varying approaches to making the decision, ranging from relying on their "gut feeling" to desiring statistics and probabilities. Religious and spiritual beliefs often guided the decision to not terminate the pregnancy. Quality of life was an important consideration, including how each option would impact the child (e.g., pain or discomfort, cognitive and physical abilities) and their family (e.g., care for other children, marriage, and career). Parents reported inconsistent communication of options by clinicians and challenges related to time constraints for making a decision and difficulty in processing information when distressed. CONCLUSION: This study offers important insights that can be used to design interventions to improve decision support and family-centred care in clinical practice.
Delaney RK; Pinto NM; Ozanne EM; Brown H; Stark LA; Watt MH; Karasawa M; Patel A; Donofrio MT; Steltzer MM; Miller SG; Zickmund SL; Fagerlin A
Cardiology in the Young
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/10.1017/s1047951121003218" target="_blank" rel="noreferrer noopener">10.1017/s1047951121003218</a>
Conversations About End-of-Life Decisions in Neonatology: Do Doctors and Parents Implement Shared Decision-Making?
Conversations; Doctors; End-of-life; Neonatology; Parents; Shared Decision Making
INTRODUCTION: Advances in perinatal medicine have contributed to significantly improved survival of newborns. While some infants die despite extensive medical treatment, a larger proportion dies following medical decision-making (MDM). International guidelines about end-of-life (EOL) MDM for neonates unify in their recommendation for shared decision-making (SDM) between doctors and parents. Yet, we do not know to what extent SDM is realized in neonatal practice. OBJECTIVE: We aim at examining to which extent SDM is implemented in the NICU setting. METHODS: By means of Qualitative Content Analysis, audio-recorded conversations between neonatologists and parents were analyzed. We used a framework by de Vos that was used to analyze similar conversations on the PICU. RESULTS: In total we analyzed 17 conversations with 23 parents of 12 NICU patients. SDM was adopted only to a small extent in neonatal EOL-MDM conversations. The extent of sharing decreased considerably over the stages of SDM. The neonatologists suggested finding a decision together with parents, while at the same time seeking parents' agreement for the intended decision to forgo life-sustaining treatment. CONCLUSIONS: Since SDM was only realized to a small extent in the NICU under study, we propose evaluating how parents in this unit experience the EOL-MDM process and whether they feel their involvement in the process acceptable and beneficial. If parents evaluate their involvement in the current approach beneficial, the need for implementation of SDM to the full extent, as suggested in the guidelines, may need to be critically re-assessed.
Schouten ES; Beyer MF; Flemmer AW; de Vos MA; Kuehlmeyer K
Frontiers in Pediatrics
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/10.3389/fped.2022.897014" target="_blank" rel="noreferrer noopener">10.3389/fped.2022.897014</a>
The Loss of a Child, Bereavement and the Search for Meaning: A Systematic Review of the Most Recent Parental Interventions
Child Loss; Interventions; Meaning-centered approach; Parental Bereavement; Systematic Review
The loss of a child is considered one of the most tragic experiences that parents can go through. The present systematic review aims to compile the most recently published interventions in bereavement support for these parents, being particularly interested in those made from a meaning-centered approach. The search for the units of analysis was guided by the standards of the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) Statement and was entered in Web of Science, Scopus and EBSCO, obtaining a total of 485 papers of which 21 have been included in this article. The results found are heterogeneous in terms of the type of intervention used and results, but they all seem to have something in common: the lack of research and reliable interventions that exist for this population. With this systematic review we intend to achieve a better understanding of these parents' needs and to highlight the enormous work that still remains ahead in order to make their bereavement experience a little less devastating.
Pelacho-Rios L; Bernabe-Valero G
Current Psychology
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/10.1007/s12144-022-03703-w" target="_blank" rel="noreferrer noopener">10.1007/s12144-022-03703-w</a>
A Qualitative Study of Parental Perspectives on Prenatal Counseling at Extreme Prematurity
Antenatal Consultation; Language; Periviability; Shared Decision Making
OBJECTIVE: To determine parental preferred language, terminology and approach after prenatal counseling for an anticipated extremely preterm delivery. STUDY DESIGN: Pregnant persons (and their partners) admitted at 22 0/7-25 6/7 weeks' estimated gestation participated in post antenatal-counseling semi-structured interviews to explore preferred language and decision-making approaches of their antenatal counseling session. Interviews were audio-recorded and transcribed, and thematic analysis of the data was performed. RESULTS: Thirty-nine interviews were conducted representing 28 total prenatal consults. Analysis identified two overarching themes impacting the whole counseling experience: the need for reassurance and compassionate communication, while parents traveled along a dynamic decision-making journey they described as fluid and ever-changing. Related themes included: 1) Finding Balance: parents reported the importance of balancing positivity and negativity as well as tailoring the amount of information, 2) The Unspoken: parents described assumptions and inferences surrounding language, resuscitation options and values that can cloud the counseling process, 3) Making the Intangible Tangible: parents reported the importance of varied communication strategies, for example visuals to better anticipate and prepare, and 4) Team Synergism: Parents expressed desire for communication and consistency among and between teams which increased trust. CONCLUSIONS: parents facing extremely premature delivery generally did not report remembering specific terminology used during prenatal consultation, but rather how the language and counseling approach made them feel and affected the decision-making process. These findings have implications for further research and educational intervention design to improve clinicians' counseling practices to better reflect parental preferences and ultimately improve counseling outcomes.
Sullivan A; Arzuaga B; Luff D; Young V; Schnur M; Williams D; Cummings C
The Journal of Pediatrics
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/10.1016/j.jpeds.2022.09.003" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2022.09.003</a>
The Experiences of Parents of Children in Pediatric Palliative Care: A Qualitative Study
Experience; Mothers; Pediatric palliative care; Qualitative study
PURPOSE: This study aims to better understand the experiences of mothers of children receiving pediatric palliative care. DESIGN AND METHODS: The qualitative phenomenological method was used to determine the mothers' experiences. The study sample included 15 mothers. Individual interviews, an introductory information form and a semi-structured interview form were used for data collection. The data were analyzed with Colaizzi's seven-step method. MAXQDA was used for coding and creating themes. RESULTS: Three main themes of the interviews emerged; family experiences, social life and care in the palliative care unit. The mothers said that family relationships were affected, that they experience fear of loss, that they experience depression, that all responsibility for treatment and care lies with the mothers, and that there is no social support. Mothers said that they are in the same place as mothers of children in similar situations and that they are happy and comfortable because they have single rooms. In addition, the mothers stated that they are very afraid of the COVID-19 virus infecting their children and therefore losing their children. CONCLUSIONS: The mothers experienced some problems such as fear of loss, depression, care burden, social support, exclusion, daily life, social relationships, feeling safe, and emotional effect. PRACTICE IMPLICATIONS: Pediatric nurses need to understand mothers' anxiety, grief, relationships with their children, and coping strategies to provide support.
Karakul A; Kıratlı D; Akgül AE; Çelik T
Journal of Pediatric 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/10.1016/j.pedn.2022.08.015" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2022.08.015</a>
Parent-Reported Experience Measures of Care for Children with Serious Illnesses: A Scoping Review
Child Care; Childhood Disease; Chronic Disease; Parental Attitude; Patient-Reported Outcome; Personal Experience; Caregiver Support; Child; Emergency Care; Empowerment; Health Care Delivery; Health Care Quality;Hospice Care; Hospital Care; Hospitalized Child; Human; Long Term Care; Neonatal Intensive Care Unit; Palliative Therapy; Review; Shared Decision Making; Systematic Review; Terminal Care
OBJECTIVE: This scoping review aimed to: 1) identify parent-reported experience measures (PaREMs) for parents of children with serious illnesses from peer-reviewed literature, 2) map the types of care experience being evaluated in PaREMs, 3) identify and describe steps followed in the measure development process, including where gaps lie and how PaREMs may be improved in future efforts, and 4) help service providers choose a PaREM suitable for their service delivery setting and strategy. DATA SOURCES: Relevant articles were systematically searched from PubMed, CINAHL, and Scopus EBSCOhost databases until June 10, 2021, followed by a manual reference list search of highly relevant articles. STUDY SELECTION: Abstracts were screened, followed by a full-text review using predetermined inclusion and exclusion criteria. DATA EXTRACTION: A standardized data extraction tool was used. DATA SYNTHESIS: Sixteen PaREMs were identified. There were large variances in the development processes across measures, and most have been developed in high-income, English-speaking Western countries. Most only assess the quality of acute inpatient care. Few measures can be used by multiple service providers or chronic care, and many do not capture all relevant domains of the parent experience. CONCLUSION(S): Service providers should integrate PaREMs into their settings to track and improve the quality of care. Given the multidisciplinary nature of pediatric care and the often-unpredictable disease trajectories of seriously ill children, measures that are applicable to multiple providers and varying lengths of care are essential for standardized assessment of quality of care and coordination among providers. To improve future PaREM development, researchers should follow consistent and methodologically robust steps, ideally in more diverse sociocultural and health systems contexts. Future measures should widen their scope to be applicable over the disease trajectory and to multiple service providers in a child's network of care for a comprehensive evaluation of experience.Copyright © 2022 Lippincott Williams and Wilkins. All rights reserved.
Ang FJL; Finkelstein EA; Gandhi M
Pediatric Critical Care Medicine
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/PCC.0000000000002996" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002996</a>
Compassionate Healthcare for Parents of Children with Life-limiting Illnesses: A Qualitative Study
Bereaved Parents; Family-Centred Care; Paediatric; Palliative Care; Patient-Centred Care
OBJECTIVES: Premature death of a child from a serious illness is probably one of the most painful experiences for a parent. This study examined the clinical experiences of bereaved parents of children with a life-limiting illness to provide recommendations for quality care. MATERIALS AND METHODS: Data were collected using semi-structured in-depth interviews with bereaved parents whose children had died at least 3 months before the interview. Parents were purposively sampled from two institutions offering end-of-life care to children with life-limiting illnesses. Data were analysed using thematic analysis. RESULTS: Data analysis revealed three main themes: (1) Clinical communication, (2) Healthcare infrastructure and (3) Non-physical aspects of healthcare. The seven subthemes uncovered were as follows: (1) Honesty and clarity, (2) empathy, (3) interdisciplinary communication, (4) inconveniences in hospital, (5) home palliative care, (6) financial burden of illness and (7) psychosocial and spiritual support. CONCLUSION: Strategies to improve healthcare for children and their families are multifold. Underlying the provision of quality care is compassion; a child and family-friendly healthcare system with compassionate providers and compassionate institutional policies are vital components to achieving quality healthcare. Culturally sensitive psychosocial, emotional and spiritual support will need to be integrated as standard care.
Chong L; Khalid F; Abdullah A
Indian 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/10.25259/ijpc_50_2021" target="_blank" rel="noreferrer noopener">10.25259/ijpc_50_2021</a>
Effectiveness of Time-Limited Eye Movement Desensitization Reprocessing Therapy for Parents of Children with a Rare Life-Limiting Illness: A Randomized Clinical Trial
Eye Movement Desensitization Reprocessing/methods; Stress Disorders Post-Traumatic/diagnosis/psychology/therapy; Child; Comorbidity; Emdr; Humans; Life-limiting illness; Parents; PTSD; Trauma; Treatment Outcome; Waiting Lists
BACKGROUND: Parents of children with a rare progressive life-limiting illness are at risk for parental posttraumatic stress disorder (PTSD). Studies on the treatment of parental PTSD with eye movement and desensitization reprocessing (EMDR) therapy in pediatric practice are lacking. Therefore this study aims to evaluate the feasibility and effectiveness of time-limited EMDR therapy in reducing PTSD symptoms, comorbid psychological symptoms, distress, and parental stress. METHODS: Mono-center randomized clinical trial conducted between February 2020 and April 2021. Fourteen parents (N = 7 mothers, N = 7 fathers) of mucopolysaccharidosis type III patients reporting PTSD symptoms on a (sub)clinical level were assigned to EMDR or a wait-list control condition followed by EMDR. Four sessions of EMDR (each 90 min) divided over two half-days were offered. Measurements were conducted at baseline, post-treatment/post-waitlist, and 3-months post-treatment. The primary outcome was PTSD symptom severity (PTSD Check List for DSM-5). Secondary outcomes included comorbid psychological symptoms (Brief Symptom Inventory), distress (Distress Thermometer for Parents) and parenting stress (Parenting Stress Questionnaire). Between-group comparisons pre-to-post treatment (N = 7 EMDR vs. N = 7 wait-list) and within-group comparisons (EMDR, N = 14) from pre-to-post treatment and from pre-treatment to 3-months follow-up were carried out per intent-to-treat linear mixed model analyses. RESULTS: Compared to wait-list, EMDR resulted in a significant reduction on total PTSD symptom severity (d = 1.78) and on comorbid psychological symptoms, distress and parenting stress (d = .63-1.83). Within-group comparisons showed a significant effect on all outcomes at post-treatment (d = 1.04-2.21) and at 3-months follow-up (d = .96-2.30) compared to baseline. EMDR was well-tolerated, associated with a low drop-out rate, a high therapy adherence and no adverse events. CONCLUSION: Time-limited EMDR reduces PTSD symptoms, psychological comorbidity, distress and parenting stress in parents of children with a rare progressive life-limiting illness. This treatment was feasible for these overburdened parents. Recurrent monitoring of PTSD symptoms, and, if needed, offering this time-limited type of trauma treatment should be introduced in everyday pediatric practice. Trial registration Netherlands Trial Register, NL8496. Registered 01-04-2020, https://trialsearch.who.int/Trial2.aspx?TrialID=NL8496 .
Conijn T; De Roos C; Vreugdenhil HJI; Van Dijk-Lokkart EM; Wijburg FA; Haverman L
Orphanet Journal of Rare Diseases
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/s13023-022-02500-9" target="_blank" rel="noreferrer noopener">10.1186/s13023-022-02500-9</a>
Achieving Child-Centred Care for Children and Young People with Life-Limiting and Life-Threatening Conditions-A Qualitative Interview Study
Family/Psychology; Parents/Psychology; Adolescent; Child; Child Care; Children; End of Life Care; Humans; Normality; Paediatrics; Palliative Care; Qualitative Research; Social Support; Symptom Assessment
This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children's hospices in the UK. Verbatim transcripts were analysed using framework analysis. A total of 106 participants were recruited: 26 children (5-17 years), 40 parents (of children 0-17 years), 13 siblings (5-17 years), 15 health and social care professionals, 12 commissioners. Participants described many inter-related symptoms, concerns, and care priorities impacting on all aspects of life. Burdensome symptoms included pain and seizures. Participants spoke of the emotional and social impacts of living with life-limiting conditions, such as being able to see friends, and accessing education and psychological support. Spiritual/existential concerns included the meaning of illness and planning for an uncertain future. Data revealed an overarching theme of pursuing 'normality', described as children's desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality. CONCLUSION: Children with life-limiting conditions and their families experience a wide range of inter-related symptoms, concerns, and care priorities. A holistic, child-centred approach to care is needed, allowing focus on pursuit of normal childhood activities. Improvements in accessibility, co-ordination, and availability of health services are required to achieve this. WHAT IS KNOWN: • Existing evidence regarding symptoms, concerns, and care priorities for children with life-limiting conditions is largely limited to proxy-reported data and those with a cancer diagnosis. • Child-centred care provision must be directed by children's perspectives on their priorities for care. WHAT IS NEW: • Social and educational activities are more important to children with life-limiting conditions than their medical concerns. • A holistic approach to care is required that extends beyond addressing medical needs, in order to support children with life-limiting conditions to focus on pursuit of normal childhood activities.
Coombes L; Braybrook D; Roach A; Scott H; Harðardóttir D; Bristowe K; Ellis-Smith C; Bluebond-Langner M; Fraser LK; Downing J; Farsides B; Murtagh FEM; Harding R
European Journal of Pediatrics
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/10.1007/s00431-022-04566-w" target="_blank" rel="noreferrer noopener">10.1007/s00431-022-04566-w</a>
Relationships and Resources Supporting Children With Serious Illness and Their Parents
Adolescent; Child; Chronic Disease; Health Personnel; Humans; Palliative Care; Parents; Quality of Life; Young Adult
OBJECTIVE: Children with complex chronic conditions (CCCs) and their parents benefit from supportive serious illness care when their conditions are severe and impact their quality of life and stress. This includes not only expert medical care but also effective relationships with the clinical team. Existing data suggest that there are opportunities for improvement. This study's aim was to explore important aspects of the relationships and resources that facilitate supportive serious illness care among children with CCCs and their parents. METHODS: We conducted semistructured interviews with adolescents and young adults (AYAs) with CCCs (aged 13-35 years), and parents of children with CCCs across 2 academic pediatric centers in the United States from December 2018 to April 2019. Transcripts were iteratively coded and analyzed by a team that included a sociologist, pediatric intensivist, and palliative care researcher by using inductive and deductive thematic analysis. RESULTS: Seven AYAs with CCCs and 9 parents participated (16 total; 1 AYA-parent dyad). Two key categories were identified around relationships with the clinical team: trust and fostering collaboration. Three key categories related to resources are information needs, making sense of life with illness, and supportive community. Many of the key categories and themes identified by participants had both tangible and intangible components and revealed the distinct yet interconnected nature of these aspects of care. CONCLUSIONS: Awareness and cultivation of relationship and resource support through innovative interventions and attention to those with increased needs in these areas may improve the serious illness care provided to children with CCCs and their parents.
Bogetz JF; Revette A; Partin L; DeCourcey DD
Hospital Pediatrics
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/10.1542/hpeds.2022-006596" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2022-006596</a>
Patient-Centered Perinatal Palliative Care: Family Birth Plans, Outcomes, and Resource Utilization in a Diverse Cohort
Article; Child; Cohort Analysis; Comfort; Consultation; Controlled Study; Demographics; Expectation; Female; Fetus; Fetus Malformation; Hospice; Human; Income Group; Infant; Newborn; Outcome Assessment; Palliative Therapy; Postpartum Hemorrhage; Prenatal Diagnosis; Prognosis; Retrospective Study; Trisomy 13
BACKGROUND: Perinatal palliative care (PPC) is an emerging concept in fetal medicine that offers quality of life options and anticipatory grief management for families of fetuses with complex conditions. Few PPC outcomes are detailed in peer-reviewed literature. OBJECTIVE(S): We aimed to describe outcomes of PPC at UT Fetal Center and Women and Infants Services at Children's Memorial Hermann. STUDY DESIGN: This is a retrospective cohort of families receiving PPC for life-limiting fetal diagnosis, such as trisomy 13 or 18 and some major structural anomalies, between 2016 and 2020. The primary outcome was whether delivery events matched families' birth plans, including fetal/neonatal clinical course matching expectations described by consultant notes. Secondary outcomes included maternal safety outcomes, use of perinatal interventions, delivery outcomes, and resource utilization outcomes. RESULT(S): Of 187 PPC consults, delivery events matched families' plans and clinicians' expectations in 89% of cases (165/185). 39% (73/187) of families requested some perinatal interventions, 64% of whom planned postnatal comfort care even while choosing antenatal interventions. Demographics and median income were similar between families who chose some interventions and those who chose comfort care. Patients choosing any interventions had more mismatches between their plans and delivery events (19% vs 2%, p < 0.001), were more likely to change their plans (24% vs 6%, p=0.001), and not unexpectedly used more healthcare resources. They were also more likely to have intraamniotic infection and postpartum hemorrhage (9% vs 22%, p=0.02), but this was associated with mode of delivery and not choice of interventions. CONCLUSION(S): Most families' perinatal experiences matched birth plans and expectations in this PPC program. Families who desired interventions used more healthcare resources, but often did so with plans for postnatal comfort care, demonstrating insight into neonatal prognosis but achieving value-consistent goals, like meeting a live neonate. PPC was safe for maternal patients and equitable across racial, ethnic, and income groups. PPC and some perinatal interventions are options for care of the whole family in complex fetal medicine.Copyright © 2022 Elsevier Ltd. All rights reserved.
Buskmiller C; Ho S; Chen M; Gants S; Crowe E; Lopez S
American Journal of Obstetrics & Gynecology MFM
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/10.1016/j.ajogmf.2022.100725" target="_blank" rel="noreferrer noopener">10.1016/j.ajogmf.2022.100725</a>
The Health of Mothers of Children with a Life-Limiting Condition: A Qualitative Interview Study
Life-Limiting Condition; Child; Paediatrics; Palliative Care; Qualitative
BACKGROUND: The number of children with a life-limiting condition is increasing. The mothers of these children commonly provide extensive care at home for their child and are at a higher risk of poor health than other mothers. The impact of this is rarely explored from mothers' perspectives. AIM: To explore mothers' accounts of their physical and mental health, experiences of accessing healthcare and who they think should support their health. DESIGN: Qualitative semi-structured interviews were conducted and analysed using thematic analysis. SETTING/PARTICIPANTS: Thirty mothers of children with a life-limiting condition were recruited via three UK children's hospices and social media. RESULTS: Mothers felt that their health concerns could be misunderstood by professionals, describing untimely and inappropriate support that failed to recognise the nature of caring for a child with a life-limiting condition. This led to mothers' reluctance in addressing these concerns. Mothers felt unable to prioritise their own needs, relative to those of their child and worried about who would look after their child if they did become unwell. They described stress as a result of battles with services rather than as a result of caregiving. Mothers valued feeling recognised as caregivers, which made it easier to look after their health alongside their child's. Hospice support was particularly valuable in this respect. CONCLUSIONS: A more unified system that recognises not only the unique set of challenges presented to mothers caring for a child with a life-limiting condition, but the value of palliative care services in supporting these mothers, is required.
Fisher V; Atkin K; Fraser LK
Palliative Medicine
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/10.1177/02692163221122325" target="_blank" rel="noreferrer noopener">10.1177/02692163221122325</a>
Primary Caregivers Caring for a Child at End of Life in Saudi Arabia
Saudi Arabia; Children at End of Life; End of Life; End of Life Care; Primary Caregivers
BACKGROUND: Caring for children at end of life (EOL) can be devastating for primary caregivers who are responsible for the physical, social, and emotional needs of their dying child. Limited information was found on resources in Saudi Arabia to manage the impact on primary caregivers from caring for a child receiving end of life care (EOLC). PURPOSE: The purpose of this study was to explore the experiences of primary caregivers caring for a child receiving EOLC within the Saudi Arabian health care system. METHODS: A descriptive phenomenological study was conducted, and 24 female primary caregivers were interviewed individually. Participants were recruited from three hospitals and the surrounding community in Jeddah, Saudi Arabia. The data were collected over a period of seven weeks between August and September of 2019. Individual in-depth interviews were conducted using an 11-item investigator-developed interview guide derived from the literature on EOL. Thematic analysis was completed using transcripts from all interviews. RESULTS: The findings suggest that primary caregivers caring for a child receiving EOLC were impacted psychologically, physically, socially, and financially. Primary caregivers expressed their heartbreak, lack of sleep, isolation, and financial challenges while caring for their child at EOL. CONCLUSIONS: Similar to what has been reported in the literature, primary caregivers caring for a child at EOL experience biopsychosocial and financial challenges. In addition, this study has implications for nursing education, practice, policy, and research regarding EOLC. Also, the findings can guide future research on EOL in Saudi Arabia and worldwide.
Hafez SA; Snethen JA; Taani M; Ngui E; Ellis J; Baothman AA
Palliative Medicine Reports
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/10.1089/pmr.2021.0072" target="_blank" rel="noreferrer noopener">10.1089/pmr.2021.0072</a>
Paediatric Death after Withdrawal of Life-Sustaining Therapies: A Scoping Review Protocol
Organ Transplantation; Terminal Care; Child; Clinical physiology; Delivery of Health Care; Humans; Paediatric Intensive & Critical Care; Paediatrics; Qualitative Research; Review Literature as Topic
INTRODUCTION: The physiology of dying after withdrawal of life-sustaining measures (WLSM) is not well described in children. This lack of knowledge makes predicting the duration of the dying process difficult. For families, not knowing this process's duration interferes with planning of rituals related to dying, travel for distant relatives and emotional strain during the wait for death. Time-to-death also impacts end-of-life care and determines whether a child will be eligible for donation after circulatory determination of death. This scoping review will summarise the current literature about what is known about the dying process in children after WLSM in paediatric intensive care units (PICUs). METHODS AND ANALYSIS: This review will use Joanna Briggs Institute methodology for scoping reviews. Databases searched will include Ovid MEDLINE, Ovid Embase, Cochrane Central Register of Controlled Trials via EBM Reviews Ovid, Ovid PsycINFO, CINAHL and Web of Science. Literature reporting on the physiology of dying process after WLSM, or tools that predict time of death in children after WLSM among children aged 0-18 years in PICUs worldwide will be considered. Literature describing the impact of prediction or timing of death after WLSM on families, healthcare workers and the organ donation process will also be included. Quantitative and qualitative studies will be evaluated. Two independent reviewers will screen references by title and abstract, and then by full text, and complete data extraction and analysis. ETHICS AND DISSEMINATION: The review uses published data and does not require ethics review. Review results will be published in a peer-reviewed scientific journal.
Francoeur C; Hornby L; Silva A; Scales NB; Weiss M; Dhanani S
BMJ Open
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/bmjopen-2022-064918" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2022-064918</a>
Palliative Care Services for Children with Life-Limiting Conditions
Palliative Therapy; Ireland; Adolescent; Article; Child; Cohort Analysis; Community Support; Controlled Study; Hospice; Human; Major Clinical Study; Male; Nurse; Patient Referral; Place of Death; Residential Care; Retrospective Study; Social Welfare; Terminal Care
Background: Palliative care (PC) for children with life-limiting conditions (LLC) is a holistic approach to achieve the best quality of life. Aim(s): Highlighting collaboration between pediatric and PC services is essential in providing seamless care. Method(s): Retrospective data obtained including patient cohort, disease profile, place of death, and the resource requirements for children with a LLC in the Mid-West region of Ireland over a 7-year period. Result(s): Seventy-seven patients were identified (n = 77); five still receiving care, four discharged, and 68 have died. The cohort ranged in age from 1 day to 17 years with a mean of approximately 6 years. Thirty-five percent of patients were less than 1 year old. Fifty-one percent were male. Seventy-one percent were referred initially to PC for end-of-life care and 29% for symptom management. Forty-four percent had home support services in place prior to referral to PC. An advanced care plan was created for 65%. Of those that died (n = 68), 70.5% died at home, 25% in hospital, and 4.4% in residential care or a children's hospice. The clinical nurse coordinator for children with life-limiting conditions (CNCCLLC) was involved with 88% of patients. The specialist PC teams were involved with 87%; 65 patients had community support, 31 patients had in-hospital support, and 29 patients were seen by both hospital and community services. Conclusion(s): Our study highlights the growing number of LLCs and current pediatric and PC services require further resources and development.Copyright © 2022, The Author(s), under exclusive licence to Royal Academy of Medicine in Ireland.
Hayden J; Larkin MA; Noonan H; Conroy M; Twomey F; O'Reilly V; Gallagher S
Irish Journal of Medical Science
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/10.1007/s11845-022-03134-3" target="_blank" rel="noreferrer noopener">10.1007/s11845-022-03134-3</a>
Reimagining a Children's Palliative Care Educational Programme for Registered Nurses in Response to the COVID-19 Pandemic
Children with Life-Limiting Conditions; Children's nurse; End of Life Care; Nurse; Online education; Paediatric; Palliative Care; Teaching and Learning
BACKGROUND: Children with life-limiting conditions are a unique population with multiple health and social care needs. Key literature indicates the need for education to support registered nurses providing care, including palliative care, to these children. In response to the COVID-19 pandemic, a palliative care programme was converted to an online programme, adopting a blended approach between national and regional facilitators. OBJECTIVES: To assess nurses' satisfaction with a re-designed palliative care programme centred around the care of children with life-limiting conditions, including their perceptions of the online format. DESIGN AND METHODS: A descriptive correlational design and online survey was used to explore the participants' perception of the content and online delivery of the Care of the Child with a Life-Limiting Condition programme. Nine sessions, comprised of five national and four regional webinars, were delivered. RESULTS: Attendees registered (n = 169) from throughout the Republic of Ireland, with 130 attending all webinars. Attendees stated online delivery of education increased their accessibility to highly qualified experts. The short, concise nature of sessions was well received. Online delivery and recorded sessions contributed to convenience with the ability to access and process information in attendees' own time being welcomed. However, the negative impact of losing face-to-face interactions was noted, including the opportunity to build relationships with colleagues caring for children with life-limiting conditions. CONCLUSIONS: Results suggest that the redesigned online programme contributed to participants' knowledge, encouraged participation and increased accessibility. An e-Learning model enables specialised education to be more equitable and accessible, ensuring regional areas are not disadvantaged due to geographical remoteness from tertiary educational centres. However, the lack of face-to-face contact was acknowledged as a hindrance to socialisation and networking. When developing future programmes, focus should be put on creating opportunities for networking and social development to compensate for the lack of face-to-face contact.
Kennedy M; Loftus M; Lafferty T; Hilliard C; Reaper-Reynolds S; O'Donnell C
Nurse Education Today
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/10.1016/j.nedt.2022.105569" target="_blank" rel="noreferrer noopener">10.1016/j.nedt.2022.105569</a>
Measuring Quality of Dying, Death and End-Of-Life Care for Children and Young People: A Scoping Review of Available Tools
Hospice Care; Terminal Care; Adolescent; Child; Humans; Palliative Care; Quality of Life; Reproducibility of Results; Adolescent; Palliative Care; Quality of Death; Quality of Dying; Review; Terminal Care; Tools
BACKGROUND: The circumstances and care provided at the end of a child's life have a profound impact on family members. Although assessing experiences and outcomes during this time is challenging, healthcare professionals have a responsibility to ensure high quality of care is provided. AIM: To identify available tools which measure the quality of dying, death and end-of-life care for children and young people; describe the content, and data on validity and reliability of existing tools. DESIGN: Scoping review was conducted following the Arksey and O'Malley methodological framework. DATA SOURCES: Four electronic databases (MEDLINE, EMBASE, CINAHL and PsycINFO) and grey literature were searched for studies published in English (January 2000-June 2021). A review of reference lists and citation searching was also undertaken. Tools needed to include a focus on the 'dying' phase of illness (defined as the last month of life). RESULTS: From 2078 articles, a total of 18 studies, reporting on 11 tools were identified. All tools were completed by primary caregivers or healthcare professionals as 'proxy' assessments; all except one was undertaken after death. Question items about quality of life and preparation for death were found in all tools; items relating to cultural aspects of care, grief and financial costs were less common. Only 6/11 had undergone psychometric testing within a paediatric palliative care setting. CONCLUSIONS: Future research should include ways to adapt, refine and improve existing tools. Assessing their wider application in different clinical and cultural settings and conducting further psychometric assessment represent areas of focus.
Mayland CR; Sunderland KA; Cooper M; Taylor P; Powell PA; Zeigler L; Cox V; Gilman C; Turner N; Flemming K; Fraser LK
Palliative Medicine
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/10.1177/02692163221105599" target="_blank" rel="noreferrer noopener">10.1177/02692163221105599</a>
Balancing Protection and Progress in Pediatric Palliative Care Research: Stakeholder Perspectives
Institutional Review Board; Palliative Care
Pediatric palliative care, including end-of-life care, remains a relatively new area of interdisciplinary clinical practice and research. Improving the multifaceted and complex care of children and their families involves research that (1) documents the experiences of children with serious illness, their families, and clinicians; (2) evaluates relationships between contextual factors and health outcomes; and (3) establishes a stronger foundation for child- and family-focused interventions to improve care. Partnership among stakeholders in family-focused research begins from design through conduct of the study. This partnership is the foundation of a dynamic research process that illuminates critical perspectives. We present a hypothetical pediatric palliative study; a qualitative descriptive study of the perspectives of adolescents and young adults with life-limiting illnesses and their parents after a discussion about an end-of-life decision. Pediatric palliative care researchers, institutional review board leaders, and the parent of a child who died comment on how to balance the obligations to improve clinical care and to protect participants in research. Their recommendations include recruiting a wide range of participants, differentiating emotional responses from harm, approaching potential participants as individuals, and seeking feedback from family advisory boards and designated reviewers with content expertise.
Mooney-Doyle K; Pyke-Grimm K A; Lanzel AF; Montgomery KE; Hassan J; Thompson A; Rouselle R; Matheny Antommaria AH
Pediatrics
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/10.1542/peds.2022-057502" target="_blank" rel="noreferrer noopener">10.1542/peds.2022-057502</a>
Supporting the Suffering of Caregivers in Neonatal Palliative Care [French]
Burnout; caregiver; Child; Human; Newborn; Palliative Therapy
Supporting the suffering of caregivers in neonatal palliative care
Accompanying newborns in palliative care remains difficult for professionals. Representations, fears and real difficulties are all factors that put them to the test. Supervision in conjunction with a pediatric palliative care resource team could be an effective way to prevent burnout and improve the quality of care.
Résumé - L’accompagnement de nouveau-nés en soins palliatifs reste difficile pour les professionnels
Les représentations, les peurs et les difficultés réelles sont autant de facteurs les mettant à l’épreuve z Une supervision en lien avec une équipe ressource de soins palliatifs pédiatriques pourrait constituer un moyen efficace pour prévenir l’épuisement professionnel et améliorer la qualité du soin.
Merger F; Hamon I
Soins, Pediatrie, Puericulture
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/10.1016/j.spp.2022.06.010" target="_blank" rel="noreferrer noopener">10.1016/j.spp.2022.06.010</a>
Social Determinants of Comfort: A New Way of Conceptualizing Pediatric End-of-Life Care
Comfort Care; Social Determinants of Health
The social determinants of comfort describe structural conditions that influence whether, to what degree, and in what forms comfort measures are offered to and accepted by people living with serious illness and their families. The notion of social determinants of comfort builds on the well-accepted concept of social determinants of health. Although some guiding palliative care documents begin to address this intersection, deeper understanding and exploration are needed. The goals of this article are to (1) describe and articulate the impact of structural and ecological factors on the comfort children and families can attain near the end of life; (2) describe how to address these factors to support children and families in attaining comfort, and maybe even flourish, at end of life; and (3) provide an agenda for research that addresses how palliative care research can advance health equity and how a focus on equity can advance palliative care science. A variety of inequities reinforce social vulnerability and disadvantage throughout the life span and can have profound effects on children, particularly children with serious illness or at the end of life. Ethical care for these children requires recognition of the social determinants of comfort.
Mooney-Doyle K; Mendola A; Naumann WC; Svynarenko R; Lindley LC
Journal of Hospice and Palliative Nursing
2022
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<a href="http://doi.org/10.1097/njh.0000000000000902" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000902</a>
Perceptible Signs of End of Life in Pediatric Intensive Care Patients
Bereavement; Death;End-of-Life Care; Intensive Care Unit; Parents; Pediatric
Background: How children die in pediatric intensive care units (PICUs) has been poorly described, and support for parents during this traumatic experience could be improved. Better information on perceptible signs of the end of life (EOL) in children may help mitigate the trauma. Objective: To describe the most common perceptible EOL signs in PICU patients. Methods: A prospective study in a PICU. Health care providers observed 28 children expected to die and noted the perceptible signs. Results: The most common perceptible signs were desaturation and bradycardia. Twenty-seven patients had at least one change in physical appearance. Gasping was noted in 12 patients. Conclusion: Perceptible signs of the EOL were different from those reported in children dying in other units or in adults. Sharing information about signs of EOL with parents may prepare them and enable them to better support their child.
Pierron C; Levy M; Mattioni V; Poncelet G; Le Bourgeois F
Journal of Palliative Medicine
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/10.1089/jpm.2021.0582" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0582</a>
Factors Impacting Pediatric Registered Nurse Attitudes toward Caring for Dying Children and their Families: A Descriptive Study
End-of-Life Care; New nurse graduates; Nursing education; Pediatrics; Undergraduate Nursing End-of-Life Care Education
PURPOSE: The purpose of this study was to gain knowledge of the educational preparation and attitudes of registered nurses at a southeastern pediatric hospital toward caring for dying children and their families. DESIGN AND METHODS: A descriptive study with two independent samples was used to examine the attitudes of registered nurses at a pediatric hospital in southeastern United States. Participants completed the Frommelt Attitude Toward Care of the Dying Scale, Form B, a 30-item survey. Descriptive and inferential statistics were used to analyze data. RESULTS: One hundred and thirty-two registered nurses participated in the study. Results indicated a statistically significant difference in attitudes toward caring for dying pediatric patient scores in registered nurses working in the hematology/oncology and intensive care units compared to the other units (p = 0.0017; 95% CI: 2.39-10.12). CONCLUSIONS: This study described the educational preparation and attitudes of registered nurses who care for children who are dying and their families. Additionally, pediatric end-of-life care is complex and is further influenced by experiences and attitudes. Future research is needed to identify educational needs to care for pediatric patients and their families at the end of life. PRACTICE IMPLICATIONS: Findings from this project indicated end-of-life care education should be integrated into undergraduate curricula. New nurse graduates who are entering the workforce should receive education on end-of-life care, especially if they are entering into a pediatric specific organization. Healthcare organizations should include end-of-life care education as part of the orientation process and annual competency process.
Richoux DN; Chatmon BN; Davis AH; Sweeney B
Journal of Pediatric Nursing
2022
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<a href="http://doi.org/10.1016/j.pedn.2022.09.010" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2022.09.010</a>
An International Study of Caregiver-Reported Burden and Quality of Life in Metachromatic Leukodystrophy
Leukodystrophy Metachromatic/Genetics; Quality of Life/Psychology; Burden of illness; Caregiver burden; Caregiver experience; Caregivers; Child; Early-onset; Family; Humans; Juvenile; Late infantile; Metachromatic leukodystrophy; Mld; Quality of Life; Surveys and Questionnaires
BACKGROUND: Metachromatic leukodystrophy (MLD) is an autosomal recessive lysosomal disorder caused by mutations in the arylsulfatase A gene. Until now, there has been little information on the burden of MLD on patients and their caregivers. This multinational study aims to quantify caregiver-related impacts of MLD across several key domains including symptoms, treatment burden, time investment, social and emotional well-being, and professional and financial impact. RESULTS: Data were collected through moderator-assisted web survey and telephone interviews. The survey was developed with extensive input from clinical experts and MLD patient advocacy groups. The EQ-5D-5L questionnaire was administered during follow-up interviews. The total sample consisted of parents of MLD patients in the US (n = 10), France (n = 10), Germany (n = 6), UK (n = 5), Belgium (n = 1), and Norway (n = 2). The impact of MLD is evident from the EQ-5D-5L scores, which indicate utility values for caregivers below respective national population norms and a higher proportion of caregivers reporting problems with anxiety/depression. Time involved for care was demonstrated by a mean of 4.1 inpatient and 29.6 outpatient hospital visits in the previous 12-month period. These commitments place stress on familial relationships with 50% of caregivers reporting their child's MLD diagnosis had negatively impacted their relationship with their spouse/partner. Professionally, 76.5% of caregivers stopped working or switched to part-time employment following their child's MLD diagnosis, and most acknowledged caring for their child had affected their potential for career progression or promotion. Differences are also observed based on late infantile versus juvenile onset MLD, time since diagnosis, and for transplanted patients versus those who received palliative care only. CONCLUSIONS: This multinational study demonstrates that MLD consistently negatively affects many aspects of caregivers' lives including health, relationships, and professional status, irrespective of location. We expect that the results of this study are generalizable to other countries. This study enhances our understanding of MLD caregiver impacts, which could improve patient care and assist in identifying support for individuals with MLD and their families.
Sevin C; Barth M; Wilds A; Afriyie A; Walz M; Dillon A; Howie K; Pang F
Orphanet Journal of Rare Diseases
2022
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<a href="http://doi.org/10.1186/s13023-022-02501-8" target="_blank" rel="noreferrer noopener">10.1186/s13023-022-02501-8</a>
Children's Hospices: An Opportunity to Put the Mouth Back in the Body
Pediatric Dentistry
Introduction The children and young people who utilise hospice services often have additional oral health care needs and may present with additional challenges in regard to mouth care. Hospice colleagues need support and would benefit from national direction in providing mouth care for this important group.Methods Questionnaires were provided to hospice nursing colleagues, parents and carers to assess current knowledge and confidence around mouth care and diet. An audit was also completed on hospice records to assess the recording of mouth care provision prior to the introduction of Mini Mouth Care Matters. Training was then provided to colleagues in the form of a virtual interactive learning session and a re-audit of hospice records was then completed.Results Almost 30% of colleagues had never received mouth care training and two-thirds of colleagues faced barriers in providing daily mouth care. Overall, 11% of children who accessed hospice services had never visited a dentist and nearly half of the children brushed less than twice a day. The Mini Mouth Care Matters assessment tool resulted in an increase in assessment of the mouth of children using the hospice, along with early identification of problems and improving daily mouth care.Conclusion Mini Mouth Care Matters is transferable to children's hospices and should be extended to all children's hospices nationally.
Schofield C; Bennett R; Orloff C; Devalia U
British Dental Journal
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/10.1038/s41415-022-4926-y" target="_blank" rel="noreferrer noopener">10.1038/s41415-022-4926-y</a>
Palliative Care Nurse: A Quantitative Study of Caring for Neonates at End-Of-Life Stage
Care Behavior; Health Care Quality; Intensive Care; Nurse; Nursing Care; Palliative Therapy; Terminal Care; Article; Checklist; Content Validity; Controlled Study; Correlation Coefficient; Face Validity; Human; Infant; Neonatal Intensive Care Unit; Newborn; Practice Guideline; Reliability
Objective: This study aimed to evaluate the quality of the care provided to newborns at End-of-Life (EOL) stages and compare the care which is already being given to the infants admitted to the NICUs of the selected hospital in (XXX) with the existing standards. Knowing how End-of-Life nursing care is provided, compared with the standard in the terminal stage of neonates' life can provide accurate information for policies, research, and educational practices. Method(s): In this descriptive study, 100 nursing care services, provided to neonates at the EOL stages and their parents, were observed and compared to the standard checklist which had been developed based on the literature review and existing standards in 2015. The study setting included the NICUs of the four hospitals affiliated to (XXX) The Content and Face Validity of the checklist were determined based on specialists' comments. The Content Validity Index was 94.85%, and its reliability was evaluated too through the inter-rater correlation coefficient (ICC = 0.715). Result(s): Only 11.49% of EOL nursing care services were given properly and 77.92% were not given at all. Results showed that 10.59% of EOL nursing care services were performed improperly. Conclusion(s): The overall rate of accordance with the EOL nursing care standards was poor (16.78%). Nursing care given to infants and their parents at EOL stages is far from the standards. This can be due to various reasons, such as inadequate training and the lack of comprehensive guidelines.Copyright © 2022 The Authors
Shahintab S; Nourian M; Rassouli M; Pourhoseingholi MA
Annals of Medicine and Surgery
2022
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<a href="http://doi.org/10.1016/j.amsu.2022.104729" target="_blank" rel="noreferrer noopener">10.1016/j.amsu.2022.104729</a>
Use of the interRAI PEDS HC in Children Receiving Home Care in Ontario, Canada
Home Care; Ontario; Child; Epidemiology; Female; Human; Male; Palliative Therapy; Pilot Study; Prevalence
BACKGROUND: There is no standard assessment tool for pediatric home care recipients in Canada, limiting the availability of comparable, population-based data. The objective of this study was to describe pediatric home care recipients who were part of a pilot implementation of the interRAI Pediatric Home Care Assessment Form (PEDS-HC) among medically complex children referred to home care agencies in three regions in Ontario, Canada. METHOD(S): All 14 agencies providing home care to children in Ontario were invited to participate in the pilot project, and 9 participated in an education session. Three of these agencies used the PEDS-HC during the pilot implementation between February 2018 and March 2020. We used de-identified data to describe the demographics, home care needs, and diagnoses of pediatric home care recipients. RESULT(S): The sample of 474 assessments was predominantly male (60.34%), with an average age at assessment of 12.36years (SD 4.56). Most (78.48%) reported English as their primary language. Most children assessed had between two and eight medical diagnoses. Diagnoses reported varied: gastrointestinal, musculoskeletal, respiratory and neurological conditions were most common. The prevalence of urinary incontinence (40.1%) and bowel incontinence (70.9%) were high. Over 60% of children were rarely or only sometimes understood. A majority of children had adequate hearing (83.5%) and vision (68.6%). Extensive services were being provided in 10% of children assessed. Most children received care both at school and at home (70.89%), with 20.89% receiving home care only. CONCLUSION(S): The PEDS-HC provides a detailed, standardised descriptive profile of medically complex children receiving home care. Expanding use of PEDS-HC would promote consistency in care planning and delivery on the patient level, enable cross-jurisdictional comparisons, and inform utilization tracking and health care funding decisions on the organization and provincial levels.Copyright © 2022. The Author(s).
Thorburn-Winsor E; Doherty M; Jones A; Vadeboncoeur C
BMC Health Services Research
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/s12913-022-08442-z" target="_blank" rel="noreferrer noopener">10.1186/s12913-022-08442-z</a>
Facing the Loss of Siblings in Childhood: Interactions and Dynamics between Bereaved Siblings and Their Parents
Bereavement; Terminal Care; Child; Child Parent Relation; Grief; Human; Sibling
INTRODUCTION: The loss of a child in a family is a painful experience. Despite this, most studies focus on the grieving experience of parents. Our understanding of sibling bereavement therefore remains underexplored. This study aims to address this gap by exploring the bereavement experience of younger bereaved siblings from the perspective of the bereaved child and the parents. METHOD(S): This study is a qualitative study conducted in Hong Kong. We recruited eleven bereaved families from 2019 to 2020. Semi-structured interviews were conducted separately with bereaved children and parents. Thematic analyses were performed. FINDINGS: Eleven bereaved siblings, aged 5 to 11, and their parents were interviewed. Four themes were generated: Parents' unawareness of bereaved siblings' grief, protecting parents from grief, comparison with the deceased siblings, and learning how to grieve. CONCLUSION(S): Our findings suggest that the family dynamics and interactions in the grieving experience are complex. The impact of grief on the bereaved child could emanate from the loss of the sibling or from the grief of the parents or from family interactions. PRACTICE IMPLICATIONS: This study highlights the importance of viewing the sibling bereavement experience in a family context and of enhancing sibling bereavement services. Helping professionals should not only provide more bereavement support to the bereaved siblings individually, but they should also enhance parents' capacity to support their bereaved children.Copyright © 2022 Elsevier Inc. All rights reserved.
Chan WCH; Leung GSM; Leung MMM; Lin MKY; Wu JKW; Yu CTK
Journal of Pediatric 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/10.1016/j.pedn.2022.07.003" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2022.07.003</a>
Predicting Time to Death After Withdrawal of Life-Sustaining Treatment in Children
Decision Support Techniques; Intensive Care Unit; Machine Learning; Pediatric; Terminal Care; Tissue and Organ Procurement
Accurately predicting time to death after withdrawal of life-sustaining treatment is valuable for family counseling and for identifying candidates for organ donation after cardiac death. This topic has been well studied in adults, but literature is scant in pediatrics. The purpose of this report is to assess the performance and clinical utility of the available tools for predicting time to death after treatment withdrawal in children. DATA SOURCES: Terms related to predicting time to death after treatment withdrawal were searched in PubMed and Embase from 1993 to November 2021. STUDY SELECTION: Studies endeavoring to predict time to death or describe factors related to time to death were included. Articles focusing on perceptions or practices of treatment withdrawal were excluded. DATA EXTRACTION: Titles, abstracts, and full text of articles were screened to determine eligibility. Data extraction was performed manually. Two-by-two tables were reconstructed with available data from each article to compare performance metrics head to head. DATA SYNTHESIS: Three hundred eighteen citations were identified from the initial search, resulting in 22 studies that were retained for full-text review. Among the pediatric studies, predictive models were developed using multiple logistic regression, Cox proportional hazards, and an advanced machine learning algorithm. In each of the original model derivation studies, the models demonstrated a classification accuracy ranging from 75% to 91% and positive predictive value ranging from 0.76 to 0.93. CONCLUSIONS: There are few tools to predict time to death after withdrawal of life-sustaining treatment in children. They are limited by small numbers and incomplete validation. Future work includes utilization of advanced machine learning models.
Winter MC; Ledbetter DR
Critical Care Explorations
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/cce.0000000000000764" target="_blank" rel="noreferrer noopener">10.1097/cce.0000000000000764</a>
Clinical Practice Guidelines for Perinatal Bereavement Care: A Systematic Quality Appraisal Using AGREE II Instrument
Hospice Care; Factual Database; Human; Reproducibility
PURPOSE: This study aimed to evaluate and analyze the methodological quality of the published clinical practice guidelines (CPGs) for perinatal bereavement care and provide a reference for implementing best clinical practices. METHOD(S): We performed a systematic and comprehensive search in five electronic databases (PubMed, The Cochrane Library, Web of Science, CNKI, Wan Fang Database), eight guideline databases, and six websites of professional organizations from March 2021 to June 2021. Four researchers used the Appraisal of Guidelines for Research and Evaluation (AGREE II) instrument to appraise the selected CPGs independently. The inter-rater reliability of AGREE II domains was calculated using the intraclass correlation coefficient with 95% CI. RESULT(S): We included a total of 8 CPGs. The mean scores of six domains ranged from the lowest score of 46.61% (editorial independence) to the highest score of 87.85% (clarity of presentation). Subgroup analysis showed no statistical difference. Each domain achieved "good" and "very good" intraclass reliability. Two CPGs were deemed as grade A (strongly recommended), five were rated as grade B (recommended with modifications), and one was evaluated as grade C (not recommended). CONCLUSION(S): Healthcare professionals in obstetrics and neonatology play an important role in helping bereaved parents and families to cope with perinatal loss. High-quality CPGs for perinatal bereavement care can serve as useful resources to improve the quality and outcomes of clinical practice. More efforts should be made to disseminate the best practices for perinatal bereavement care. When implementing GCPs in countries or regions with different backgrounds, professional translations, strict validations, and cultural adaptations should be taken into account.Copyright © 2022 Elsevier Inc. All rights reserved.
Zhuang S; Ma X; Xiao G; Zhao Y; Hou J; Wang Y
Journal of Pediatric 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/10.1016/j.pedn.2022.04.007" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2022.04.007</a>