Charting the Territory: Children and families living with progressive life-threatening conditions.

Title

Charting the Territory: Children and families living with progressive life-threatening conditions.

Creator

Siden H; Steele R

Publisher

Paediatrics Child Health

Date

2015

Subject

Genetic conditions; Metabolic diseses; Neurology; Palliative care

Description

OBJECTIVES:
To 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.

METHODS:
Cross-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.

RESULTS:
These 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.

CONCLUSIONS:
These 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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

PMID

PMID:25914572 | PMCID:PMC4403275

Citation

Siden H; Steele R, “Charting the Territory: Children and families living with progressive life-threatening conditions.,” Pediatric Palliative Care Library, accessed May 27, 2018, http://pedpalascnetlibrary.omeka.net/items/show/10946.

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