Asian Nurs Res.  2023 Oct;17(4):226-234. 10.1016/j.anr.2023.09.001.

Phenomenological Study on the Lived Experiences of Mothers Caring for Their Pubescent Children with Developmental Disabilities

• Joung WJ

• KMID: 2547528
• DOI: http://doi.org/10.1016/j.anr.2023.09.001

Abstract

Purpose
This phenomenological study explored and revealed the mothers’ lived experiences of caring for pubescent children with developmental disabilities (DDs) in Korea.
Methods
Data were collected from semistructured individual in-depth interviews with nine mothers. This study adopted Giorgi's phenomenological analysis, through which a general structure of mothers' caregiving experiences with their pubescent adolescents with DDs was formulated.
Results
The lived experiences of mothers caring for pubescent children with DDs were clustered into four themes and nine subthemes from 19 meaning units: (1) not being allowed to take delight in child's growth due to unbalanced growth pace; (2) feeling marginalized along with the disabled child; (3) feeling like being kicked out of society slowly and permanently; and (4) rearrangement of care direction and purpose.
Conclusions
This qualitative study captured vivid experiences of mothers who care for pubescent children with DDs by illustrating these mothers’ detailed physical, emotional, and relational difficulties in their caring. Most importantly, this study found that it is puberty that these mothers come to clearly understand that their children and their disabilities are inseparable and change the purpose and direction of childcare. The findings of this study can help health professionals better understand that these mothers are in urgent need for emotional support and need to be included in nursing care. And this study can be used as base data for increasing disability awareness for both healthcare workers and public in general.

Keyword

adolescent; caregivers; developmental disabilities; puberty; qualitative research