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 4226–4250 of 4332 publications
"It scares me to know that we might not have been there!": a qualitative study into the experiences of parents of seriously ill children participating in ethical case discussions
BACKGROUND: All hospital trusts in Norway have clinical ethics committees (CEC). Some of them invite next of kin/patients to be present during the discussion of their case. This study looks closer at how parents of seriously ill children have experienced being…
On the Child's Own Initiative: Parents Communicate with Their Dying Child About Death
Open and honest communication has been identified as an important factor in providing good palliative care. However, there is no easy solution to if, when, and how parents and a dying child should communicate about death. This article reports how bereaved pare…
Opening end-of-life discussions: how to introduce Voicing My CHOiCESTM, an advance care planning guide for adolescents and young adults
OBJECTIVE: Each year, more than 11,000 adolescents and young adults (AYAs), aged 15-34, die from cancer and other life-threatening conditions. In order to facilitate the transition from curative to end-of-life (EoL) care, it is recommended that EoL discussions…
Paediatric palliative care: recommendations for treatment of symptoms in the Netherlands
BACKGROUND: Children dying of a life threatening disease suffer a great deal at the end of life. Symptom control is often unsatisfactory, partly because many caregivers are simply not familiar with paediatric palliative care. To ensure that a child with a life…
Palliative care in neonatal neurology: robust support for infants, families and clinicians
Infants with neurological injury and their families face unique challenges in the neonatal intensive care unit. As specialty palliative care support becomes increasingly available, we must consider how to intentionally incorporate palliative care principles in…
Perceived timeliness of referral to hospice palliative care among bereaved family members in Korea
PURPOSE: We aimed to explore the perceived timeliness of referral to hospice palliative care unit (HPCU) among bereaved family members in Korea and factors associated therewith.
METHODS: Cross-sectional questionnaire survey was performed for bereaved family me…
Research Priorities in Pediatric Palliative Care
OBJECTIVE: To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda.
STUDY DESIGN: A 4-round modified Delphi online survey was administered …
The relationship between the nursing environment and delivering culturally sensitive perinatal hospice care
BACKGROUND: Wide variations exist among perinatal hospices, and barriers to perinatal palliative care exist at the healthcare level. Research in the area of culturally sensitive perinatal palliative care has been scarce, a gap which this study addresses.
OBJEC…
The Spirit of "Ubuntu" in Children's Palliative Care
The concept of "ubuntu," a Nguni word, is found in many southern African cultures and means that we are part of all humanity and we are who we are through our interconnectedness with others. Children with life-limiting conditions often become isolated and take…
Understanding death with limited experience in life: dying children's and adolescents' understanding of their own terminal illness and death
PURPOSE OF REVIEW: An up-to-date summary of the literature on children's and adolescents' understanding of their own terminal illness and death.
RECENT FINDINGS: Clinicians still find it difficult to speak with pediatric patients about death even though guidel…
Cultural influences in pediatric cancer from diagnosis to cure/end of life
OBJECTIVE: To review the literature on cultural factors influencing clinical care and family management of pediatric cancer.
METHODS: A literature review including 72 articles related to cultural issues in pediatric cancer was conducted. Information was organi…
Developing a perinatal memory-making program at a children's hospital
Most pregnancies are a time of joy and anticipation, but unfortunately there are families who instead suffer one of life's most difficult events: a perinatal loss. Although grief processes have some common aspects, grief over a child can be especially intense,…
Family Experience in a Regional Participant Contact Registry for Research on Intellectual Disability
Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather than recruit…
Openness and avoidance--a longitudinal study of fathers of children with intellectual disability.
BACKGROUND: Fathers' interactions with children who have intellectual disabilities (ID) or developmental delays (DD) have increased over the past few decades and may be expected to continue to increase as maternal and paternal roles, along with other gender ro…
Paediatric palliative care in Denmark should be strengthened
Paediatric palliative care is the total care for the child's body, mind and spirit, and involves support to the family. It begins when a life-threatening disease is diagnosed and depends on an interdisciplinary team approach. In 2013, 295 children under the ag…
Pain therapy, pediatric palliative care and end-of-life care: training, experience, and reactions of pediatric residents in Italy
UNLABELLED: Pediatric palliative care represents the ideal response to life-limiting and life-threatening diseases and requires a specific and multidisciplinary training. This study aims at evaluating in Italy the training programs offered in pain therapy and …
Posttraumatic growth in parents caring for a child with a life-limiting illness: A structural equation model
When parents first meet their child, they take on the entwined joys and burdens of caring for another person. Providing care for their child becomes the basic expectation, during health and illness, through the developmental milestones, into adulthood and beyo…
Prevalence of life-limiting conditions in children and young people in England: Time trends by area type
Palliative care services in England lack data on the number of children with 'life limiting conditions' (LLCs). Recent research determined that the prevalence of LLCs in children in England was double previous estimates. We build on this by analysing time-tren…