An exploratory assessment of pediatric patient and parent needs after implantable cardioverter defibrillator implant.


Journal

Pacing and clinical electrophysiology : PACE
ISSN: 1540-8159
Titre abrégé: Pacing Clin Electrophysiol
Pays: United States
ID NLM: 7803944

Informations de publication

Date de publication:
03 2020
Historique:
received: 31 07 2019
revised: 15 01 2020
accepted: 15 01 2020
pubmed: 24 1 2020
medline: 16 3 2021
entrez: 24 1 2020
Statut: ppublish

Résumé

Placement of an implantable cardioverter defibrillator (ICD) is often accompanied by psychological adjustment issues in pediatric patients and their parents. Although anxiety, depression, and lowered quality of life have been seen in these patients, no studies have investigated patient or parent reported needs. This exploratory study describes the needs of pediatric ICD patients and parents and assesses whether patient factors of age, gender, depression, and anxiety are associated with specific needs. ICD patients ages 8-21 years and their parents completed a needs analysis survey assessing various domains of functioning. Patients also completed self-reported measures of depression and anxiety. Thirty-two patients (28% female) and their parents (72% mothers) completed the survey. Patients' most frequently endorsed needs involved educational issues: understanding their cardiac event/diagnosis (34%), medications (34%), and how the ICD would change their lifestyle (31%). Parents' most frequently endorsed needs involved family issues; almost half of parents (47%) were concerned about their children's frustration with their overprotectiveness and 28% were concerned with their child feeling depressed or anxious. Patients who reported feeling overprotected (12.1 ± 3.4 vs 17.4 ± 3.5 years; P = .001) were significantly younger than those who did not. Experiencing peer issues was more frequently endorsed by females than males (33% of females vs 4% of males; P = .026). ICD patients and parents endorsed markedly different needs. Patients focused on understanding their ICD, whereas parents were more focused on their children's emotional needs. Novel ways of educating patients about their device and clinic-based screenings of emotional functioning may serve to meet these needs.

Sections du résumé

BACKGROUND
Placement of an implantable cardioverter defibrillator (ICD) is often accompanied by psychological adjustment issues in pediatric patients and their parents. Although anxiety, depression, and lowered quality of life have been seen in these patients, no studies have investigated patient or parent reported needs. This exploratory study describes the needs of pediatric ICD patients and parents and assesses whether patient factors of age, gender, depression, and anxiety are associated with specific needs.
METHODS
ICD patients ages 8-21 years and their parents completed a needs analysis survey assessing various domains of functioning. Patients also completed self-reported measures of depression and anxiety.
RESULTS
Thirty-two patients (28% female) and their parents (72% mothers) completed the survey. Patients' most frequently endorsed needs involved educational issues: understanding their cardiac event/diagnosis (34%), medications (34%), and how the ICD would change their lifestyle (31%). Parents' most frequently endorsed needs involved family issues; almost half of parents (47%) were concerned about their children's frustration with their overprotectiveness and 28% were concerned with their child feeling depressed or anxious. Patients who reported feeling overprotected (12.1 ± 3.4 vs 17.4 ± 3.5 years; P = .001) were significantly younger than those who did not. Experiencing peer issues was more frequently endorsed by females than males (33% of females vs 4% of males; P = .026).
CONCLUSIONS
ICD patients and parents endorsed markedly different needs. Patients focused on understanding their ICD, whereas parents were more focused on their children's emotional needs. Novel ways of educating patients about their device and clinic-based screenings of emotional functioning may serve to meet these needs.

Identifiants

pubmed: 31971265
doi: 10.1111/pace.13876
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

289-296

Informations de copyright

© 2020 Wiley Periodicals, Inc.

Références

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Auteurs

Lauren M Schneider (LM)

Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Stanford, California.

Jessie J Wong (JJ)

Division of Pediatric Endocrinology, Department of Pediatrics, Stanford University School of Medicine, Stanford, California.

Anthony Trela (A)

Division of Pediatric Cardiology, Lucile Packard Children's Hospital at Stanford, Palo Alto, California.

Debra Hanisch (D)

Division of Pediatric Cardiology, Lucile Packard Children's Hospital at Stanford, Palo Alto, California.

Richard J Shaw (RJ)

Department of Psychiatry and Behavioral Sciences, Stanford University School of Medicine, Stanford, California.

Samuel F Sears (SF)

Department of Psychology and Cardiovascular Science, East Carolina University, Greenville, North Carolina.

Kara S Motonaga (KS)

Division of Pediatric Cardiology, Department of Pediatrics, Stanford University School of Medicine, Stanford, California.

Scott R Ceresnak (SR)

Division of Pediatric Cardiology, Department of Pediatrics, Stanford University School of Medicine, Stanford, California.

Korey K Hood (KK)

Division of Pediatric Endocrinology, Department of Pediatrics, Stanford University School of Medicine, Stanford, California.

Anne M Dubin (AM)

Division of Pediatric Cardiology, Department of Pediatrics, Stanford University School of Medicine, Stanford, California.

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