"We Learned by Hitting the Wall" Experiences of Parents With A Child With Hydrocephalus: A Qualitative Research

The study aimed to explore and understand the feelings, thoughts, and experiences of parents of children with hydrocephalus.

This study used a descriptive phenomenological qualitative approach.

Data were collected through semi-structured individual interviews with 10 parents of children with hydrocephalus between July 2022 and January 2023. Thematic analysis was performed using Colaizzi's seven-step method.

In the analysis of the data, two main themes emerged as a result of the interviews obtained from the parents. The first main theme was Emotional and Psychological Struggles. Three sub-themes formed this theme. These were Emotional Reactions and Future Concerns, Torn Between Children and Access Barriers, and Psychological Impact. The other theme was Coping and Meaning-Making Process. This theme was divided into four sub-themes. These sub-themes were: Support Systems, Learning and Understanding the Diagnosis, Acceptance and Spiritual Meaning-Making, and Personal Growth and Maturity.

The study focused on the emotional and psychological struggles, as well as the coping and meaning-making processes of parents of children with hydrocephalus. Exploring caregivers' experiences and the emotional, social, and cognitive dimensions of their journey can help inform more comprehensive and compassionate support mechanisms for families.

The findings show the difficulties parents face and reveal their feelings in depth. The training and counselling that can be prepared according to these results will enable parents and children to receive care under better conditions. In addition, these results may also provide data for interventional studies to be planned in the future.

Empowering parents to care for a child with hydrocephalus is a neglected issue. Understanding parents' feelings and thoughts in depth can help us better assist them in coping with their challenges. Getting support and information makes it easier for parents to cope.

The Consolidated Criteria for Reporting Qualitative Research checklist was used.

No patient or public contribution.