Living With Guillain-Barré Syndrome as Children.

Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age10-18
SponsorUniversity Hospital, Toulouse

About this trial

The goal of this qualitative observational study is to explore the lived experience and psychological aftermath of children who were affected by Guillain-Barré Syndrome (GBS) two to five years earlier. GBS is a rare and acute neurological condition, and while motor recovery is generally good in children, residual symptoms such as fatigue, pain, anxiety, or depression may persist and impact quality of life.

The main questions it aims to answer are:

How do children experience and recall their illness and recovery after GBS? What psychological or contextual factors might contribute to emotional distress or depressive symptoms in the years following the disease?

Participants will:

Be children aged 10 or older who had GBS two to five years prior. Participate in a 45-60-minute semi-structured individual interview during a routine follow-up visit.

Respond to a screening questionnaire for depressive symptoms (Children's Depression Inventory or Beck Depression Inventory Fast Screen).

Undergo a brief clinical examination to assess any remaining physical sequelae. Interviews will be audio recorded, transcribed verbatim, and pseudonymized. Thematic reflexive analysis will be performed following Braun and Clarke's methodology. Recruitment will continue until theoretical saturation is reached (approximately 25 participants expected) across two centers (Toulouse and Montpellier).

This study aims to generate new insights into pediatric psychological outcomes after GBS, in order to improve acute care and follow-up, and potentially guide future mental health support for affected children.

Eligibility criteria

This trial does not accept healthy volunteers

Qualifiers

Children or adolescents aged 10 years or older at the time of the interview

History of Guillain-Barré syndrome (GBS) diagnosed in childhood

Time since acute episode: between 2 and 5 years

Sufficient mastery of the French language to participate in a semi-structured interview

Disqualifiers

Presence of a neurological disease other than GBS that may interfere with participation or interpretation of data

Severe cognitive impairment preventing the child or adolescent from engaging in the interview

Trial population

Participants will be selected from the population of children and adolescents who experienced Guillain-Barré Syndrome (GBS) during childhood and received medical care at one of two university hospitals in southern France: Toulouse University Hospital and Montpellier University Hospital. Eligible participants will be aged 10 years or older at the time of the study and must be between 2 and 5 years post-acute GBS episode. The population includes individuals with sufficient command of the French language to engage in a semi-structured interview exploring the long-term psychosocial impact of GBS. Both male and female participants will be considered, provided they meet the inclusion criteria and give informed consent (or assent with parental consent for minors).

Trial design

Design model

Cohort

Time perspective

Prospective

Treatments tested in this trial

Not listed

Trial groups

25 Participants
are grouped into 1 trial group
Group A: semi-structured interview

Trial outcomes

Primary outcomes

1

Child's psychological and emotional experience after Guillain-Barré Syndrome

The child's subjective experience will be assessed through a semi-structured individual interview conducted by a trained researcher. The outcome will explore psychological themes such as fear, anxiety, mood changes, body image, and coping strategies in the aftermath of Guillain-Barré Syndrome. Interviews will be recorded, transcribed verbatim, and analyzed using inductive thematic analysis. No standardized questionnaire will be used; the approach is entirely qualitative and descriptive.

Time frame
From 6 months to 5 years after the acute Guillain-Barré episode

Secondary outcomes

1

Child's perception of hospitalization and medical care during Guillain-Barré Syndrome

This outcome will assess how the child perceived their stay in hospital during the acute phase of Guillain-Barré Syndrome, including memories of medical procedures, communication with healthcare professionals, perceived support, and emotional reactions. Information will be gathered through semi-structured interviews, allowing the participant to freely express their lived experience. Thematic content analysis will be used to identify recurring patterns and significant narratives. Retrospective exploration from the onset of symptoms through hospital discharge.

Time frame
From 6 months to 5 years after the acute Guillain-Barré episode

Other outcomes

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