ArticlePaediatrics & child health2015
Charting the Territory: Children and families living with progressive life-threatening conditions.
Article in Paediatrics & child health, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 24 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
24 citing papers in PubMed, 2 syntheses or guidelines pooled it, 45 citations in OpenAlex.
- The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review.Palliative medicine · 2023Pooled it
- Impact of Specialized Pediatric Palliative Care: A Systematic Review.Journal of pain and symptom management · 2020Pooled it
- Hope in Pediatric Palliative Care: A Systematic Review.Children (Basel, Switzerland) · 2026Review
- Mapping the palliative care needs of children with cancer: a scoping review through the bio-psycho-socio-spiritual lens.Pediatric research · 2026Review
- Reactions, Adaptation, and Support Needs of Siblings of Children with a Life-Limiting Disease: The Parents' Experiences.Children (Basel, Switzerland) · 2026Article
- Criteria to evaluate unmet health-related needs of persons living with rare diseases and their caregivers: rapid literature review and stakeholder consultations.Orphanet journal of rare diseases · 2025Review
- Relationship Between Parental Distress and Proxy Symptom Reports in Pediatric Palliative Care.Journal of pain and symptom management · 2025Article
- Examining emotional and behavioural trajectories in siblings of children with life-limiting conditions.BMC palliative care · 2024Article
- Barriers to the spiritual care of parents taking care of their child with a life-limiting condition at home.European journal of pediatrics · 2024Article
- Clinical characteristics of children with severe neurologic impairment: A scoping review.Journal of hospital medicine · 2023Article
- Self-reported experiences of siblings of children with life-threatening conditions: A scoping review.Journal of child health care : for professionals working with children in the hospital and community · 2022Article
- Applicability of Actigraphy for Assessing Sleep Behaviour in Children with Palliative Care Needs Benchmarked against the Gold Standard Polysomnography.Journal of clinical medicine · 2022Article
- Trust in Physicians, Anxiety and Depression, and Decision-Making Preferences among Parents of Children with Serious Illness.Journal of palliative medicine · 2022Article
- Pediatric Palliative Care Parents' Distress, Financial Difficulty, and Child Symptoms.Journal of pain and symptom management · 2022Article
- Polysymptomatology in Pediatric Patients Receiving Palliative Care Based on Parent-Reported Data.JAMA network open · 2021Article
- Songwriting intervention for cognitively-impaired children with life-limiting conditions: Study protocol.Contemporary clinical trials communications · 2021Article
- Insights into the Frequency and Distinguishing Features of Sleep Disorders in Pediatric Palliative Care Incorporating a Systematic Sleep Protocol.Children (Basel, Switzerland) · 2021Article
- Long-Term Follow-Up of Legacy Services Offered by Children's Hospitals in the United States.Palliative medicine reports · 2021Article
- The Association of Perceived Social Support with Anxiety over Time in Parents of Children with Serious Illnesses.Journal of palliative medicine · 2020Article
- Transforming a Face-to-Face Legacy Intervention to a Web-Based Legacy Intervention for Children With Advanced Cancer.Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association · 2020Article
Corrections and comments
- Erratum issued
Authors and funding
2 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesTo increase awareness of the topic of paediatric palliative care among practicing physicians in Canada by exploring the impact of a child's neurological or rare genetic life-threatening condition on the affected child and his/her parents.
methodsCross-sectional, baseline results from an observational, longitudinal study, Charting the Territory, which followed 275 children and 390 parents from 258 families. Parents completed multiple surveys, for themselves and their child.
resultsThese children had a high symptom burden. The three most common symptoms were pain, sleep problems and feeding difficulties; on average, they had 3.2 symptoms of concern. Despite analgesic use, the frequency of pain episodes and distress were invariant over time, suggesting that treatments were not successful. Parents experienced anxiety, depression and burden; at the same time they also reported positive life change and a high degree of spirituality. The child's condition resulted in parental changes in living arrangements, work status and hours devoted to caregiving. Nearly two-thirds of families were involved with a palliative care team; the size of the community in which a family resided did not make a significant difference in such involvement.
conclusionsThese families experience many challenges, for the patient, other individual members and the family as a whole. At least some of these challenges may be alleviated by early and organized palliative care. Effective interventions are needed to enhance symptom management for the ill child and to alleviate the various negative impacts on the family.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.