Published literature
Publications
Published children's palliative care research: browsable, searchable and filterable by the same taxonomy as researchers, groups and guides.
This library is curated by The Siden Research Team as part of the TRENDS in Pediatric Palliative Care newsletter and library. Learn more about TRENDS and The Siden Research Team and subscribe to read their monthly expert commentaries on their website.
Showing 976–1000 of 4332 publications
Improving Safe Opioid Prescribing for Pediatric Hospice and Palliative Care Patients
Outcomes: 1. Utilizing a quality improvement-approach, participants will self-report the ability to assess the implementation of several opioid safety components (i.e. opioid safety contract, open-ended question, and mental health screener) and how they may im…
Inclusive practice for research with children with disability: a guide
Inclusive practice for research with children with disability: a guide
Increasing Access to Care: Designing a Blended Curriculum to Educate Adult Hospice Nurses in Caring for Pediatric Patients
Access to care for pediatric hospice patients is inhibited by a lack of providers specifically educated to care for pediatric patients. Education that seeks to address this gap in care must develop the specific knowledge and skills required to care for pediatr…
Increasing trend in patients with life-limiting and complex chronic conditions
Introduction and objectives: To estimate the frequency of patients with diagnoses associated with life-limiting conditions (LLCs) or complex chronic conditions (CCCs). Methods: Retrospective mixed population-based and hospital-based cohort study. Study univers…
Indi Gregory: A Wider Perspective on Children's Best Interests at the End-of-life
Extract
I. INTRODUCTION
The case of Indi Gregory is the last of a series of high-profile judgments regarding the end-of-life for terminally ill children. Such cases have typically generated wide controversy among scholars, practitioners, the general public, an…
Influence of the functional intervention on the development of essential social skills in children with life-limiting conditions
Life-limiting conditions often cause children to be overlooked as participants in everyday activities. For parents child development should lead to independence in daily living activity. For parents of children who are disabled, independence is a step to a bet…
International consensus on sleep problems in pediatric palliative care: Paving the way
Objective Sleep problems constitute a common and heterogeneous complaint in pediatric palliative care (PPC), where they often contribute to disease morbidity and cause additional distress to children and adolescents and their families already facing the burden…
Interventions Performed in Children With Immunocompromised Conditions in the Pediatric Intensive Care Unit Within 48 Hours of Death
Background: Understanding interventions preceding death in children with immunocompromised conditions is important to ensure a peaceful and dignified perideath experience. The aim of this study was to describe the number of interventions performed in the pedia…
Intrathecal baclofen therapy as treatment for spasticity and dystonia: Review of cases in a pediatric palliative care unit
Introduction: Patients managed in the Pediatric Palliative Care Integral Unit (PPCIU) have serious neurological conditions that involve significant damage at central nervous system level. The movement disorder is a very common clinical problem and for the pati…
INTRODUCTION OF A PERINATAL PALLIATIVE CLINICAL NURSE SPECIALIST ROLE ENHANCING PARTNERSHIP WORKING BETWEEN PALLIATIVE CARE AND PERINATAL SERVICES-ONE YEAR ON
Objectives Support such as referral to perinatal palliative care and access to hospice services may promote well-being of families of babies diagnosed with life-limiting conditions.1 2 A children's hospice-based perinatal palliative clinical nurse specialist (…
Investigation of the impact of paediatric hospices on the quality of care of paediatric nurses
BACKGROUND: The establishment of paediatric hospices improves the quality of care of paediatric nurses. AIM: To examine the effect of establishing paediatric hospices on the quality of care of paediatric nurses.
METHOD(S): Data was collected between 22 October…
Is it early enough? The authentic meaning of the pediatric palliative approach between early and late referral in pediatric oncology: a case study
The literature widely supports the benefits of early integration of palliative care into pediatric oncological care; however, many barriers to its successful integration remain. Integrating palliative care as early as possible in the oncology pathway is critic…
It's about living a normal life: parents' quality of life when their child has a life-threatening or life-limiting condition - a qualitative study
BACKGROUND: Pediatric palliative care (PPC) seeks to enhance the quality of life (QoL) for both children and their families. While most studies within PPC have focused on the ill child's QoL, less is known about parents' experiences of their own QoL. The aim o…
"Just let me go"; When suicidal ideation and goals of care collide in adolescent cancer at the end of life
Cancer in adolescents and young adults is associated with an increased risk for suicidal ideation (SI). There are no reported pediatric oncology cases describing management of SI during end of life. We present the case of a 14-year-old male with relapsed, high…
Knowledge, attitudes and practices of critical care unit personnel regarding pediatric palliative care: a cross-sectional study
Background: Few studies have evaluated the perceptions of healthcare providers in China regarding pediatric palliative care, particularly in critical care units (PICUs), where many children receive palliative care. To evaluate the knowledge, attitudes and prac…
Learning to Trust Yourself: Decision-Making Skills Among Parents of Children With Medical Complexity
Context: Children with medical complexity have substantial medical needs and their caregivers must make many challenging decisions about their care. Caregivers often become more involved in decisions over time, but it is unclear what skills they develop that f…
Lessons Learned Establishing the Palliative Care Research Cooperative's Qualitative Data Repository
Data sharing is increasingly an expectation in health research as part of a general move toward more open sciences. In the United States, in particular, the implementation of the 2023 National Institutes of Health Data Management and Sharing Policy has made it…
Listening to voices that are challenging to hear: participatory hermeneutics ethnography with children with medical complexity
This manuscript explores the integration of participatory hermeneutic ethnography in research with children with complexity, particularly those who communicate differently. Traditional research methods often exclude these children, leading to a lack of represe…
'Listen to our voice!' using co-creation and art-based methods to explore the welfare and wellbeing of siblings of children with life-limiting conditions
Sibling of children with a life-limiting condition (LLC) face challenge. Yet there is relatively little research specifically investigating the psychosocial impact on siblings living with a child with an LLC. A qualitative participatory methodology helped expl…
Living-loss: A narrative synthesis review of the grief process in parents
Problem: Realizing that a child has a lifelong developmental condition like Autism Spectrum Disorder (ASD) can create feelings of sadness and grief for the parents. It remains unclear, however, how parents deal with and understand these emotions. The purpose o…
Living with Pompe disease: results from a qualitative interview study with children and adolescents and their caregivers
Background: Children and adolescents with Pompe disease (PD) face chronic and progressive myopathy requiring time-intensive enzyme replacement therapy (ERT). Little is known about their perspectives on the disease and its treatment. This study explored their p…
Living with the threat of losing a child: Parents' experiences of the transplantation process with a severely ill child who received stem cells from a sibling
Purpose When a child needs a hematopoietic stem cell transplant, the seriousness of the child's illness is highlighted. The purpose of this study was to explore parents' experiences of the transplantation process when two children in the family are involved, o…
Maintaining Parental Roles During Neonatal End-of-Life Care: A Review of the Literature
Parents who are experiencing neonatal death need support in promoting and maintaining their parental role. This includes parenting their infant during end-of-life. Bedside nurses should partner with parents to help them maintain the parent-infant relationship …
Making space for grief: The impact of remembrance programs for pediatric healthcare providers
OBJECTIVES: While caring for seriously ill children is a rewarding experience, pediatric healthcare providers may experience sadness and emotional distress when their patient dies. These feelings, particularly when not addressed, can lead to negative health an…
'Managing an unexpected life - a caregiver's career': Parents' experience of caring for their child with a non-malignant life-limiting condition
Parents of children with non-malignant life-limiting conditions frequently accept roles that exceed the conventional activities of parenting in relation to the intensity, complexity and temporal nature of the family caregiver experience. This paper explores th…