Experience of Parents/Carers of Children With Severe Motor Disabilities Suffering From Spinal Pain? (NCT06287359) | Clinical Trial Compass
CompletedNot Applicable
Experience of Parents/Carers of Children With Severe Motor Disabilities Suffering From Spinal Pain?
France13 participantsStarted 2024-04-01
Plain-language summary
Parents of disabled children suffer from back pain more frequently than the general population. At present, the literature does not identify any specific factors responsible for this suffering.
For patients suffering from chronic back pain, there are specific treatment programmes in the Physical Medicine and Rehabilitation Department, with a focus on pain management.
The investigators would like to develop specific programmes for parents/carers of children/adolescents with severe motor disabilities.
To achieve this, it is important to gain a better understanding of the factors that contribute to the onset of pain.
With this in mind, the investigators are conducting a qualitative study to gain a better understanding of the day-to-day lives of these parents.
Who can participate
Age range
18 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion Criteria:
* Parents or carers of children with severe motor disabilities complaining of spinal pain
Exclusion Criteria:
* Parent/carer refusing to participate
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Since this study focused on interviewing parents and carers of children with severe motor disabilities who have spinal pain, would my child's situation — including their specific type of motor disability — fit the kind of experiences this research was trying to understand?
2This trial is now completed and collected information through individual interviews rather than testing a treatment — so what findings or insights came out of it that might be relevant to how we manage my child's low back pain?
3Since this was an observational interview study rather than a clinical treatment trial, are there any actual treatment trials or therapies for spinal pain in children with motor disabilities that you'd recommend we look into based on what research like this has uncovered?
4Given that this study explored the experiences of carers rather than directly treating children, do you think the challenges we face as a family in managing our child's spinal pain are ones that are well understood by the medical community, or are there still big gaps in knowledge?
5Are there any clinical guidelines or care pathways for managing low back pain in children with severe motor disabilities that have been informed by qualitative research like this, and would they change anything about our current approach?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.