Benefits of being part of a support group for caregivers of children with multiple disabilities: a qualitative study

• Published in: Revista peruana de medicina experimental y salud pública Vol. 41; no. 1; pp. 54 - 61
• Main Authors: Rodríguez-Vélez, María Elena, Cantillo-Medina, Claudia Patricia, Perdomo-Romero, Alix Yaneth
• Format: Journal Article
• Language: English; Spanish
• Published: Peru Instituto Nacional de Salud 27.05.2024
• Subjects: Adaptation, Psychological; Adolescent; Adult; Caregivers - psychology; Child; Child, Preschool; Disabled Children; Female; Focus Groups; Humans; Male; Middle Aged; Original; Qualitative Research; Self-Help Groups - organization & administration; Social Support; Young Adult
• ISSN: 1726-4634; 1726-4642
• DOI: 10.17843/rpmesp.2024.411.13218

Motivation for the study. Filling a knowledge gap regarding support groups for caregivers of children with multiple disabilities. Main findings. Support groups are valuable spaces for social support and learning for caregivers of children with multiple disabilities. They facilitate resilience and coping strategies following the birth of a child with multiple disabilities. They promote the participation and empowerment of caregivers of children with multiple disabilities to address access barriers and advocate for the fundamental rights of children. Implications. It is important to promote and support support groups for caregivers of children with multiple disabilities. To explore the perceived benefits of participating in a support group of caregivers of children with multiple disabilities. A qualitative study with a focused ethnographic approach was conducted from October 2022 to February 2023, in which we applied convenience sampling. We included 20 caregivers of children with multiple disabilities. Information was collected through participant observation, focus groups, and semi-structured interviews. Thematic analysis was performed by applying Braun and Clark's proposals. The emerging themes were: social support network: integrating, informing, and helping each other; learning space: learning to take care and to take care of oneself; promoting empowerment: identifying and facing access barriers. We found that the support group functions as a social support network provides information, reduces uncertainty, and facilitates coping and resilience after the birth and upbringing of a child with multiple disabilities. It is a space where one learns to care for and take care of oneself and where empowerment for the defense of the rights of children with disabilities is promoted.