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SESSION TITLE: Pediatric Potpourri SESSION TYPE: Original Investigations PRESENTED ON: 10/06/2024 01:30 pm - 02:30 pm PURPOSE: Non-invasive ventilation (NIV) is increasingly used in children with life-limiting conditions (LLCs) to treat their…
BACKGROUND: Telemedicine is a means of providing efficient treatment for children with complex chronic conditions and/or subsidiary palliative paediatric care. AIM: To evaluate how satisfied families and healthcare professionals are with a…
Trisomy 18 syndrome, also known as Edwards syndrome, is the second most common autosomal chromosome syndrome after Down syndrome. Trisomy 18 is a serious medical disorder due to the increased occurrence of structural defects, the high neonatal and…
BACKGROUND: The study aimed to understand the experience of and identify the motivations for parents participating in health research for their children with medical complexity (CMC). Patient-oriented research strategies are increasingly important in…
Background: Patient and Public Involvement (PPI) is an important component of healthcare research. Conducting PPI within paediatric palliative care research requires specific ethical and practical considerations. Regular reviews of PPI activity are…
This qualitative study explores the perceptions of impact associated with engaging in a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Interviews were completed with 12 parents who had…
Within paediatric palliative care, it is essential for families and providers to have open, equal, and trusting relationships. In practice, however, building relationships can be challenging. Investing in better understanding the differences in each…
AIM: This qualitative study aimed to explore nurses' perspectives regarding the challenges of providing perinatal/neonatal end-of-life care in a regional hospital. METHOD(S): This exploratory qualitative study was conducted with 20 nurses working in…
Background: Children with severe neurological impairment (SNI) often receive care in the pediatric intensive care unit (PICU), yet little is known about their parents' experiences. Objective(s): To examine sources of and changes in stress among…
OBJECTIVE: To investigate the perspectives of experienced parents regarding guidelines and personalisation for managing imminent extremely premature births (22-26 weeks gestational age (GA)) . The study examined four scenarios: no guideline, a…
Background: Epidermolysis bullosa (EB) is a rare, incurable genodermatosis that presents with blistering and skin fragility. Complications can be localised or generalised, limited to the skin or have systemic effects resulting in death. Caring for a…
Background: Parents of children with life-threatening conditions may have to balance their personal, family, and professional lives in the anticipation of child loss and the demands of providing medical care for their child. The challenges these…
Mental health nurses who engage in research are likely to undertake research on sensitive topics, related to experiences of illness, care delivery and treatment. With recognition of the high prevalence of trauma in the lives of people who interact…
Background: In the context of pediatric palliative care, where the quality of life of children with life-limiting or life-threatening conditions is of utmost importance, the integration of health technology must support the provision of care.…
Purpose: The experience of ethnically diverse parents of children with serious illness in the US health care system has not been well studied. Listening to families from these communities about their experiences could identify modifiable barriers to…
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…
Objective: To grasp the meaning of perinatal palliative care for the multidisciplinary team. Methods: This is a qualitative study guided by content analysis. The study included 56 health professionals working in maternal and child units of a public…
INTRODUCTION: Pediatric mortality is an often underestimated and overlooked figure but has significant impact on providers and families. University Hospitals Rainbow Babies and Children has launched a program to identify factors surrounding pediatric…
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.…
Context: Parents of children who die in the pediatric intensive care unit (PICU) carry memories of their child's suffering throughout a lifelong grieving experience. Given their prolonged time at the bedside, PICU nurses are poised to attend to dying…
BACKGROUND: Pediatric palliative transport (PPT) is the practice of offering critically and terminally ill children requiring life-sustaining measures the opportunity to be discharged from the hospital to home or a hospice facility for end-of-life…
Background: There is a lack of research about the experiences and impact of having a sibling with a life-limiting condition. Studies focus on the sibling experience during childhood but the experience and impact during adulthood is unknown despite…
BACKGROUND: Children and young people with life-limiting conditions and their families need physical and emotional support to manage the challenges of their lives. There is a lack of synthesised qualitative research about how music therapy is…
BACKGROUND: End of life care for Children and Young People (CYP) is known to be an emotive area of practice. Previous studies involving qualified nurses have demonstrated that nurses feel they need more end-of-life care education, as well as a…
BACKGROUND: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication…
The development of an empathetic approach when working with parents and families is fundamental to both social work and children's nursing; however, opportunities to develop this are limited. RealCare Baby infant simulator dolls were used with the…
Background: Few studies have examined the spiritual environment of parents of children receiving palliative care in Southern European countries, which are mostly characterized by secularization (or the abandonment of traditional religiosity) and an…
Background: Specialist care units cater to targeted cohorts of patients, applying evidence-based practice to people with a specific condition (e.g., dementia) or meeting other specific criteria (e.g., children). This paper aimed to collate…
Introduction: Advancement in medical expertise and technology has led to a growing cohort of children with medical complexity (CMC), who make up a rising proportion of childhood deaths. However, end of life in CMC is poorly understood and little is…
Objective: To describe the experiences of nurses as they learned to provide palliative care in the NICU. Design: Interpretive description. Setting: Four NICUs in three Canadian provinces, including one rural center and three tertiary centers.…
Aim: This work explores the experiences and meaning attributed by parents who underwent the decision-making process of withholding and/or withdrawing life-sustaining treatment for their newborn. Methods: Audio-recorded face-to-face interviews were…
Background: Provision of paediatric palliative care for children with life-threatening or life-limiting conditions and their families is often complex. Guidelines can support professionals to deliver high quality care. Stakeholders expressed the need…
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…
Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual…
To examine the parent's experiences of bonding in the care of newborns who were seriously ill during the neonatal period and did not survive. Design: Data were collected through 7 interviews with 10 parents whose infants were cared for and died in a…
Spiritual care is an essential domain of pediatric palliative care. The current mainland China faces a lack of national guidance and a shortage of specialized personnel to provide spiritual care in a traditional developing country. Objectives: To…
Pediatric shared decision-making (SDM) is a fundamental part of family-centered care. Pediatric palliative care (PPC) is one of the more difficult fields for healthcare providers when choosing to utilize SDM. However, to our knowledge, there are…
OBJECTIVES: The ways in which children understand dying and death remain poorly understood; most studies have been carried out with samples other than persons with an illness. The objective of this study was to understand the process by which…
A child's illness and admission in a hospital are stressful and can negatively affect the child and his/her caregivers. The stress is further exacerbated when a child is critically ill and has been admitted to an intensive care unit (ICU). The…
Introduction: The World Health Organisation defines paediatric palliative care (PPC) as caring for the child's body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be…
