Impact of Providing Nursing Support on Parental Stress Related to Preoperative Care of a Newborn with Hirschsprung's Disease
This study is investigating how much stress parents feel when their newborn baby has Hirschsprung's disease and is waiting for surgery. Specifically, it wants to find out if having dedicated nursing support can help reduce this stress. Hirschsprung's disease is a condition where babies have problems with their bowel that usually needs an operation. While waiting for this surgery, babies sometimes need special care at home, with nurses visiting to help. The study will look at families where babies are receiving this kind of care before their operation. Doctors hope to understand if this nursing support makes a real difference in how parents cope during this challenging time.
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¿De qué trata este estudio?
This research study is about helping new parents who have a baby diagnosed with Hirschsprung's disease. Hirschsprung's disease is a condition that affects a baby's large intestine, making it difficult for them to pass stools properly. Most babies with this condition will need an operation to fix it.
While waiting for surgery, some babies can go home, but they often need special care, which might involve regular nursing visits. These nurses help parents manage their baby's condition, teach them what to do, and offer support. This study wants to understand if having this extra help from nurses can reduce the stress that parents might feel during this difficult time. It's a challenging period for families, and knowing that nursing support makes a positive difference could help healthcare teams plan better care in the future.
By carefully looking at how parents' stress levels change with and without this nursing support, the researchers hope to show that this kind of help is really valuable. The findings could lead to better support programmes for all parents of babies with Hirschsprung's disease, making their journey a little bit easier.
Puntos clave
- The study looks at parental stress when babies await Hirschsprung's surgery.
- It investigates if nursing support helps reduce this stress.
- No new treatments or medicines are given; it's about existing support.
- Participation involves sharing experiences through questionnaires or discussions.
- Findings could improve future support for families with similar situations.
¿Quién puede ser elegible?
This study is looking for families with a new baby (under two months old) who has been diagnosed with or is thought to have Hirschsprung's disease. A key part of joining is that your baby is able to go home before their surgery and receives regular nursing care – typically once or twice a day – to help manage their condition.
Both parents or a legal guardian would need to agree to be part of the study by signing a form that explains everything. They should also be happy to follow the study's plan while the baby is waiting for their operation.
You wouldn't be able to join if your baby isn't receiving daily nursing support, or if they needed surgery right away because their nursing care wasn't working. Also, if your baby can't go home before their surgery, or if you decide you don't want to take part, then this study wouldn't be right for your family.
¿Podría este estudio ser adecuado para ti?
Responde estas preguntas rápidas para ver si puedes ser elegible. Esto es solo una guía: el equipo de investigación toma la decisión final.
- Is your baby a newborn or under 2 months old?
- Does your baby have confirmed or suspected Hirschsprung's disease?
- Is your baby receiving nursing care at home (1-2 times a day) while waiting for surgery?
- Are you able to sign a form agreeing to take part in the study?
¿En qué consiste la participación?
If you decide to take part, the study will involve assessing your stress levels as parents while your baby is receiving preoperative nursing care at home. This will likely involve filling out some questionnaires or talking to researchers about your experiences.
There won't be any new medicines or extra medical procedures for your baby as part of this study. The focus is purely on the impact of the nursing support you are already receiving. The exact number of visits or assessments isn't detailed, but it would relate to the period your baby is at home waiting for surgery. The total duration of your involvement would depend on how long your baby needs care before their operation.
Riesgos y beneficios potenciales
Ubicaciones (1)
- APHMCódigo postal verificadoMarsella, Francia· Reclutamiento
Preguntas comunes
What is Hirschsprung's disease?
It's a condition that affects a baby's large intestine, causing problems with bowel movements. It usually needs an operation to fix it.
Will my baby get any new treatments in this study?
No, this study only looks at the impact of nursing support you're already receiving; it doesn't involve new medicines or treatments for your baby.
Who is providing the nursing support?
The nursing support would be provided by healthcare professionals as part of your baby's standard care before surgery.
Will taking part in the study affect my baby's surgery?
No, participating in this study will not change when or how your baby's surgery is planned or carried out.
What if I decide I don't want to continue in the study?
You can withdraw from the study at any time without giving a reason, and it will not affect your or your baby's medical care.
Cómo obtener más información
Melanie Boulanger
Siempre hable con su médico de cabecera o especialista antes de decidir participar en un estudio.
¿Interesado en participar?
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Impulsado por nuestro foro en community.patient.info. Por favor, sea respetuoso — esto no es un consejo médico.