Advance Care Planning for Children With Rare Diseases: A Pilot RCT.
Pediatrics
; 153(6)2024 Jun 01.
Article
en En
| MEDLINE
| ID: mdl-38699801
ABSTRACT
BACKGROUND AND OBJECTIVE:
Pediatric rare diseases are often life-limiting conditions and/or require constant caregiving. Investigators assessed the initial efficacy of the FAmily CEntered (FACE) pediatric advance care planning (pACP), FACE-Rare, intervention on families' quality of life.METHODS:
A pilot-phase, single-blinded, intent-to-treat, randomized controlled clinical trial enrolled families from 1 pediatric quaternary hospital between 2021 and 2023. Intervention families received 3 weekly 60-minute (FACE-Rare pACP) sessions (1) Carer Support Needs Assessment Tool or Action Plan, (2) Carer Support Needs Assessment Tol Action Plan Review, and (3) Pediatric NextSteps:
Respecting Choices pACP. Controls received treatment as usual (TAU). Outcome measures were Beck Anxiety Inventory, Family Appraisal of Caregiving, Functional Assessment of Chronic Illness Therapy (FACIT)-Spirituality, and health care utilization. Generalized mixed effect models with γ response assessed the intervention effect at 3-month follow-up.RESULTS:
Children (n = 21) were aged 1 to 10 years, 48% male, 24% Black; and 100% technology dependent. Primary family caregivers (n = 21) were aged 30 to 43 years, 19% male, 19% Black; and 27% household income below the Federal poverty level. Dyads underwent 11 randomization 9 to FACE-Rare and 12 to TAU. TAU caregivers reported statistically lower meaning and peace than FACE-Rare caregivers (0.9, P = .03, confidence interval [CI] 0.75-0.99). Black caregivers reported significantly less caregiver distress (0.7, P = .04, CI 0.47-0.98) than non-Black caregivers. Poor families reported more anxiety (3.5, P = .002, CI 1.62-7.94), more caregiver strain (1.2, P = .006, CI 1.07-1.42); and less family well-being (0.8, P = .02, CI 0.64-0.95).CONCLUSIONS:
FACE®-Rare was feasible, acceptable, safe, and demonstrated initial efficacy, providing greater feelings of meaning and peace to caregivers. Poverty impacted well-being. A multisite trial is needed to determine generalizability.
Texto completo:
1
Colección:
01-internacional
Base de datos:
MEDLINE
Asunto principal:
Calidad de Vida
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Cuidadores
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Enfermedades Raras
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Planificación Anticipada de Atención
Límite:
Adult
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Child
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Child, preschool
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Female
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Humans
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Infant
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Male
Idioma:
En
Revista:
Pediatrics
Año:
2024
Tipo del documento:
Article
Pais de publicación:
Estados Unidos