# The lived experience of French parents concerning the diagnosis of their children with borderline personality disorder

## TL;DR

This study explores how French parents experience learning their child has borderline personality disorder and how a support program helps them.

## Contribution

It is the first study to explore parents' experiences of a BPD diagnosis and the impact of the Family Connections program.

## Key findings

- Parents faced a long and difficult journey to obtain a BPD diagnosis for their child.
- The Family Connections program helped parents understand the diagnosis and improve communication with their child.
- Parents emphasized the need for clear and early explanations about BPD.

## Abstract

Psychiatrists often hesitate to diagnose borderline personality disorder (BPD). While individuals with BPD have reported both positive and negative experiences upon receiving their diagnosis, no study has specifically explored this issue among parents. Parents of children diagnosed with BPD can benefit from recently developed family-support interventions such as the Family Connections program. Our study aimed to explore the experiences of parents learning about their child’s BPD diagnosis and to investigate the impact of the Family Connections program on their experiences.

This qualitative study, conducted in France following the five-stage IPSE method, involved parents of children with BPD recruited through the Family Connections association in Versailles. We conducted semi-structured interviews and used purposive sampling for data collection until data saturation was reached. Data analysis was performed using a descriptive and structuring approach with NVivo 12 software to elucidate the structure of lived experiences.

The study included 21 parents. The structure of the lived experiences was characterized by three central axes: (1) the long and difficult road to diagnosis; (2) communicating the BPD diagnosis to parents: a necessary step; (3) the pitfalls of receiving the diagnosis. The Family Connections program provided significant support in these areas, particularly in understanding the diagnosis, enhancing communication with their child, and reducing social isolation.

These findings highlight the challenges parents face when receiving a BPD diagnosis for their child and underscore the need for an early, clear, and detailed explanation of the diagnosis. The specific experiences of receiving the diagnosis are indicative of the broader care experience parents undergo and highlight their need and right to be informed, supported, and guided throughout their child’s treatment.

The online version contains supplementary material available at 10.1186/s40479-024-00258-z.