September 2022 List
Title
September 2022 List
Collection Items
The Impact of COVID-19 on Palliative Care for Children Within the UK
Background/aims: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) represent a group with complex care needs that are met by multiple services and thus may be subject to particular vulnerabilities.
The DIGNITAL Study
Background: Dignity Therapy (DT) is a validated psycho-therapeutic intervention designed to influence a sense of meaning and purpose for individuals and their families. DT is well received by patients and family members, with research identifying…
Qualitative Study of Paediatric Advance Care Planning Through Simulation: How We Did It and the Lessons Learned
Background/aims: Simulation allows clinicians to experience a replication of reality, enabling feasible and ethical study of complex phenomena, such as communication and care around the end of life. There is a paucity of literature describing how to…
From Pediatric to Adult Palliative Care Service: The Continuity of Care
Background/aims: Define a gradual transition from pediatric to adult palliative care able to support adolescent patients (pts) with chronic and progressive diseases and their family.
Enabling Children and Young People to Take Patient and Public Involvement Roles in Paediatric Palliative Care Research
Background/aims: Patient and public involvement (PPI) is essential to design and deliver meaningful research, but evidence on how to involve children and young people (CYP) in palliative care studies is limited. We aim to develop strategies to engage…
Challenges and Incentives for Integrating Person-Centred Outcome Measures Into Routine Paediatric Palliative Care: Health, Social Care and Commissioner Perspectives
Background/aims: To successfully integrate a newly developed measure into clinical practice, the challenges and incentives for implementation must be understood, and these are specific to each measure. Previous research has focused on…
Advance Care Plan Discussion among Parents of Children with Cerebral Palsy
Aim: To evaluate parental perception of advance care plan (ACP) discussions in families of Malaysian children with bilateral cerebral palsy (CP) classified in Gross Motor Function Classification System levels IV or V for (1) acceptance of the ACP…
A Qualitative Study Into Parents' Experiences With Loss During Their Child's End-Of-Life: Enduring and Intrusions of Grief
Background/aims: Parents of children receiving palliative care experience incremental losses and feelings of grief. During the end-of-life (EOL), the dynamics of being confronted with the growing threat of losing their child while fulfilling…
Physician Decision-Making Process about Withholding/Withdrawing Life-Sustaining Treatments in Paediatric Patients: A Systematic Review of Qualitative Evidence
BACKGROUND: With paediatric patients, deciding whether to withhold/withdraw life-sustaining treatments (LST) at the end of life is difficult and ethically sensitive. Little is understood about how and why physicians decide on withholding/withdrawing…
Postdischarge Health Resource Use in Pediatric Survivors of Prolonged Mechanical Ventilation for Acute Respiratory Illness
We aimed to identify characteristics associated with postdischarge health resource use in children without medical complexity who survived an episode of prolonged mechanical ventilation for respiratory illness. We hypothesized that longer durations…
Parental Perspective in Paediatric Palliative Care: A Systematic Review of Literature Using the PRISMA Method
Research in Parental Perspectives are pivotal in gaining understanding of parents' experiences, issues, concerns and attitude in pediatric palliative care which affects their decision making. However only a limited number of such studies have…
'I No Longer Feel Alone': Meeting the Needs of Bereaved Grandparents Through a Children's Hospice Support Group
BACKGROUND: Children's hospices provide a range of family-centred care services, including bereavement support. Not all hospices provide specific services for grandparents. AIM: To explore how a hospice-based bereavement support group supported…
Reported Costs of Children with Medical Complexity-A Systematic Review
Examining reported costs for Children with Medical Complexity (CMCs) is essential because costing and resource utilization studies influence policy and operational decisions. Our objectives were to (1) examine how authors identified CMCs in…
Long-Term Psychological Consequences of Parental Bereavement Prior to Midlife: Volunteering Helps
OBJECTIVES: Losing a child prior to midlife may be a uniquely traumatic event that continues to compromise parents' well-being in later life. This study compared psychological well-being between bereaved and non-bereaved parents, and examined whether…
Study to Assess the Effectiveness of Simulation Technique to Overcome Misperceptions of Undergraduate Nursing Students' About Paediatric Palliative Care
OBJECTIVES: The purpose of the current study is to suggest a powerful strategy to overcome the misperceptions of undergraduate nursing students' about paediatric palliative care (PPC), through simulation technique. MATERIALS AND METHODS: A one-group…
Music Therapy and Pediatric Palliative Care: Songwriting with Children in The End-Of-Life
Children’s needs in pediatric palliative care (PPC) are complex and are determined by age, the course of the disease, family structure, and cultural background [1]. The child’s family system also has multiple needs which must be properly assessed and…
Using EmPalPed-An Educational Toolkit on Essential Messages in Palliative Care and Pain Management in Children-As a Strategy to Promote Pediatric Palliative Care
BACKGROUND: Most children needing palliative care (PC) live in low- and middle-income countries. In Colombia, pediatric palliative care (PPC) knowledge among healthcare professionals (HCPs) is lacking as PPC is not included in the educational…
Family Experiences with Palliative Care in Freestanding Paediatric Hospices: A Scoping Review
BACKGROUND: Paediatric palliative care provides supportive care to children with life-threatening or life-limiting illnesses throughout the disease trajectory. Up to 42% of children receiving palliative care in Canada will die within a freestanding…
Care Intensity and Palliative Care in Chronically Critically Ill Infants
ABSTRACT Context Increasingly, chronically critically ill (CCI) infants survive to discharge from Neonatal Intensive Care Units (NICUs). Little is known about their care intensity and the primary and specialty palliative care families receive at and…
Ethical Considerations in Ever-Expanding Utilization of ECLS: A Research Agenda
Technological advancements and rapid expansion in the clinical use of extracorporeal life support (ECLS) across all age ranges in the last decade, including during the COVID-19 pandemic, has led to important ethical considerations. As a costly and…
Palliative and Critical Care: Their Convergence in the Pediatric Intensive Care Unit
Palliative care (PC) is an integral component of optimal critical care (CC) practice for pediatric patients facing life-threatening illness. PC acts as an additional resource for patients and families as they navigate through critical illness.…
Age-Appropriate Advance Care Planning in Children Diagnosed with a Life-Limiting Condition: A Systematic Review
Pediatric advance care planning (pACP) is an important strategy to support patient-centered care. It is known to be difficult, yet paramount, to involve the child in pACP while adjusting treatment to age and the corresponding stage of development.…
Parents' Experiences of Being Involved in Medical Decision Making for their Child with a Life-Limiting Condition: A Narrative Review
Background/aims: Parental involvement in the decision-making processes about medical treatment for their child with a life-limiting condition is recognised as good practice. Previous research has highlighted factors affecting the decision-making…
Application of Critical Race Theory in Palliative Care Research: A Scoping Review
Context: Structural racism negatively impacts individuals and populations. In the medical literature, including that of palliative care, structural racism's influence on interracial differences in outcomes remains poorly examined. Examining the…
Inequalities in Access to Bereavement Support Before and During COVID-19: Findings from Voluntary and Community Sector Bereavement Services in the UK
Background/aims: The COVID-19 pandemic has resulted in global mass bereavement; in the UK alone there have been 140,000 deaths to date, with a disproportionate impact on Black, Asian or minoritized ethnic (BME) communities. Voluntary and community…
Quality of End-of-Life Care in Children With Neurological Conditions in Belgium: A Population-Level Evaluation Using Face-Validated Quality Indicators
Background/aims: Neurological conditions, such as cerebral palsy and muscular dystrophy, are the main diagnoses of referral for many pediatric palliative care teams. Nevertheless, parents of children with such conditions globally report insufficient…
How Can We Measure Quality of Dying, Death, and Quality of Care at the End-of-Life for Children and Young Adults? A Scoping Literature Review
Background/aims: The death of a child or young adult is fundamentally painful. Evaluating end-of-life care experiences can identify specific needs and ensure good quality care is provided. Our aim was to identify tools assessing quality of dying,…
Provider Perceptions for Withdrawing Life Sustaining Therapies at a Large Pediatric Hospital
Context: More than 74% of pediatric deaths occur in an intensive care unit (ICU), with 40% occurring after withdrawal of life-sustaining therapies (WOLST). No needs assessment has described provider needs or suggestions for improving the WOLST…
How doctors manage conflicts with families of critically ill patients during conversations about end-of-life decisions in neonatal, pediatric, and adult intensive care
Purpose Intensive care is a stressful environment in which team-family conflicts commonly occur. If managed poorly, conflicts can have negative effects on all parties involved. Previous studies mainly investigated these conflicts and their management…