Insisting on help, facing challenges, and maintaining balance: The lived experiences of caregivers raising a child with developmental delay in the remote islands of Kinmen

• Published in: Journal of pediatric nursing Vol. 75; pp. 99 - 107
• Main Authors: Huang, Yu-Ping, Chang, Li-Jung, Hsieh, Hsiu-Fang
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.03.2024
• Subjects: Caregiver; Child; Developmental delay; Phenomenology; Remote island; Phenomenology; Remote island; Child; Developmental delay; Caregiver
• ISSN: 0882-5963; 1532-8449
• DOI: 10.1016/j.pedn.2023.12.011

To explore the lived experiences of the caregivers of children with developmental delay (DD) on the remote island of Kinmen, Taiwan. This descriptive phenomenological study included 14 caregivers of 16 children with DD recruited from Kinmen, Taiwan. Data were collected from September 2020 to February 2021 with face-to-face semi-structured interviews, which were transcribed verbatim and analyzed using thematic analysis. Twelve caregivers were mothers; there was one father and one grandmother. Their mean age was 37.93 ± 5.17 years. The mean age of the children was 3.90 ± 1.49 years; 11 were male (69%). As we began our study, the COVID-19 pandemic occurred, which influenced two of the three themes: (1) focusing on their child's delayed development, which involved seeking a diagnosis and blaming themselves; (2) facing barriers to caring a child with DD on a remote island, which included ostracization of their child and limited off-island medical resources, especially during COVID-19; and (3) maintaining a healthy life balance, which involved protecting their child from physical or spiritual harm, including exposure to COVID-19, and reflecting on their strengths. Our findings highlight the challenges of caring for a child with DD in the Kinmen islands of Taiwan, and the impact of the COVID-19 pandemic. Healthcare professionals are encouraged to provide caregivers of children with DD living in remote, island communities an opportunity to share their caregiving experiences and provide strategies for obtaining medical care, which could help reduce caregiver burden. •Caregivers traveled off-island for advanced medical treatments due to shortages of professionals and equipment.•Seeking off-island care was even more challenging during the COVID-19 pandemic.•Caregivers cautiously disclosed information about their child to limit experiences of stigma.•Caregivers adopted religious and folk practices to protect their child and their families from disaster and bad luck.•Living on a small, remote island provided caregivers with feelings of safety, especially during the pandemic.