Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: charting the territory.

Title

Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: charting the territory.

Creator

Siden H; Steele R; Brant R; Cadell S; Davies B; Straatman L; Widger K; Andrews GS

Publisher

Bmc Pediatrics

Date

2010

Subject

Biomedical Research/methods; Canada; Child; Genetic Diseases Inborn/therapy; Humans; Longitudinal Studies/methods; Mental Disorders/therapy; Metabolic Diseases/therapy

Description

BACKGROUND: Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the condition progresses along an uncertain trajectory towards death. Much is known about the genetics and pathophysiology of these diseases, but very little has been documented about the trajectory of symptoms for children with these conditions or the associated experience of their families. A longitudinal study design will help to close this gap in knowledge. METHODS/DESIGN: Charting the Territory is a longitudinal descriptive, correlational study currently underway with children 0-19 years who are diagnosed with progressive neurological, metabolic, or chromosomal conditions and their families. The purpose of the study is to determine and document the clinical progression of the condition and the associated bio-psychosocial-spiritual experiences of the parents and siblings age

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).

Citation List Month

n/a

PMID

PMID: 20854664 PMCID: PMC2954926

Citation

Siden H; Steele R; Brant R; Cadell S; Davies B; Straatman L; Widger K; Andrews GS, “Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: charting the territory.,” Pediatric Palliative Care Library, accessed November 20, 2018, https://pedpalascnetlibrary.omeka.net/items/show/11084.

Social Bookmarking