How can parents and caregivers make informed decisions about their child's care?

Communicating with your child's healthcare providers is crucial. This means having conversations. Yet, often there are communication breakdowns, which occur because healthcare providers do not take the time to have a conversation. Instead, they see themselves as the expert and tell the family the diagnosis, recommendations, and prognosis. The result is parents feel overwhelmed, scared, and even intimidated. They may not understand the jargon or medical implications. Emotions are high, which is why it is important to encourage parents to ask questions and ask for clarification. When healthcare providers are proactive and take the time to have a conversation, parents feel they have a voice in their child's treatment plan.

Durante a internação hospitalar, o familiar desempenha papel fundamental não apenas para a criança, mas também para os profissionais de saúde, pois a equipe se dirige a ele para tratar questões sobre o manejo do cuidado e a troca de informações sobre a saúde da criança.

A comunicação é a fonte essencial nesse contexto, esclarecer todas as dúvidas com a equipe de enfermagem, com o médico, buscar saber sobre tratamento, ter uma interação melhor. O enfermeiro deve ser claro e objetivo, sempre acolher essa família, sempre explicar sobre os procedimentos.

Para evitar que eles se sintam assim na sua jornada como pacientes, tenha a certeza de que as crianças se sentirão confortáveis e dispostas enquanto estiverem internadas, isso vai além da organização do ambiente.

A comunicação é fundamental e de extrema importância nesse momento, onde você esclarece suas dúvidas quanto a tratamento junto com a equipe multidisciplinar.

A segunda opinião médica consiste na consulta a outro profissional especialista, com o objetivo de esclarecer dúvidas sobre um caso analisado anteriormente. Essa consulta pode ser solicitada para diagnósticos, tratamentos e laudos de exames, tanto entre colegas quanto pelo paciente.

As parents or care-takers encounter challenges with the health of a child or loved one, searching for support from others who have had similar experiences can be a major contributor to making helpful choices. Peer support can be a cornerstone to creating the support system needed by parents or caretakers experiencing a broad range of specific challenges. There are many organized networks of volunteer peers willing to share their experiences and help others. Parents and caretakers of children experiencing trauma, addiction, mental health, or physical health issues can depend on each other for sound advice and support. Peer-to-peer support can be a critical life-line, for parents whose child is in the care of a licensed professional.

This is all great advice provided above. However, it‘s a lot for a parent of a child with a disease/condition to do all at once. Every parent has their ability and capacity to cope and manage, hence parents should not be made to feel guilty for not ticking all of these boxes. I think most important factors are that they feel comfortable with their care team and that they can trust them, to ensure they have a support network to help with daily tasks and/or for emotional support, and last but not least - to take care of themselves, in order to be able to continue taking care of their child and the rest of the family. Everything else will come if and when it‘s needed.

Parents and caregivers can make informed decisions about their child's care by staying informed about healthcare options, consulting healthcare professionals, researching reputable sources, and actively engaging in discussions with their child's doctors. Seeking second opinions and considering various perspectives can also contribute to well-informed decision-making.

Thank you for this great information. It is so important to interact with your child's care team. Help them see more than demographics and aggregate numbers of success and failure in recovery or plan of treatment. They are humans paid to understand and report on the numbers, but care teams are made up of people and you want to be seen as a person, too. Please attend any opportunities to speak with the care team and reach out to them when you have questions.