Powitalnik - Gentle Welcome Guide Key Information for Professionals

How does Powitalnik support medical professionals in communicating a child's diagnosis?

Powitalnik is a tool supporting parents facing the diagnosis of their child’s disability or chronic illness. It contains practical information about available forms of support, psychological first aid, and ways of coping with stress.

To whom and when should you give Powitalnik?

Powitalnik is aimed at parents whose children have been diagnosed with a serious illness, disability, or other health problems that may significantly affect the functioning of the entire family.

Powitalnik can also be given to parents of children who are still undergoing diagnosis, but where there is a significant likelihood of confirmation of illness or disability.

In the case of premature babies, Powitalnik should only be given to parents of children who are certain or very likely to experience serious health complications.

Powitalnik also supports pregnant women who have been diagnosed withn abnormal fetal development or are suspected of having such a diagnosis.

Powitalnik should only be given to parents who have been previously informed by medical staff about their child’s (possible) diagnosis.
Giving Powitalnik cannot replace and musn’t precede a thorough discussion between the attending physician and the parents about their child’s health.

How to talk to a parent whose child has been diagnosed with an illness or disability?

"Now, 20 years later, what matters most to me is how we were told about her illness. A geneticist and a cardiologist talked to us. There was beauty in that moment—they said that our child would need our help, that a girl would be born into the world who would need to be cared for. 'You, as a family, will definitely be able to cope with this,' we heard."

"We are left alone, without sufficient medical knowledge and with a complete lack of information about systemic solutions. No one is born with an instruction manual for raising a child with a disability. Especially since every disability is different."

A child’s diagnosis changes the course of life. Parents are overwhelmed, frightened, and often lonely. The words and gestures you direct at

them at this stage have an extremely strong impact on their health and well-being. They can also affect the relationship with their child as well as their trust in you and the entire healthcare system. That is why it is important to ensure supportive and empathetic communication.

Knowledge and a sense of security

Hospital procedures and ward rules are well known to you, the medical professionals. For parents, however, this is a completely unfamiliar environment, which can be intimidating and often causes anxiety. They really want to be partners in their child’s treatment and therapy, but sometimes they simply don’t know what to do. Feelings of helplessness and lack of control make them doubt their parenting skills.

Regularly inform parents about their child’s health, procedures, and further treatment plans.
Use understandable language when explaining procedures and rules in the ward.
Encourage parents to actively participate in treatment, emphasizing their role as partners.
Praise parents, emphasizing their competence and role in the treatment process.
Admit when you don’t know something if the situation is unclear, informing them that you are working on the best solution:
“We don’t know yet what is wrong with your child”;
“We haven’t decided yet what to do next. We are trying to make the best decision.”

Do not assume that parents are familiar with hospital procedures – do not use medical jargon without explanation.
Do not leave parents in uncertainty or isolate them from information about their child’s condition.
Do not ignore parents’ emotions – do not downplay their feelings of helplessness and lack of control.
Do not hide difficult information – it is better to convey incomplete knowledge than to remain silent.

Respect

Parents who are experiencing the serious illness of their beloved child need support, space to experience their emotions (especially difficult ones), and respect and empathy. Allow them to cry and be angry.

“Your feelings are normal. I am here for you.”

“I will give you a moment to process this information. I will try to answer any questions you may have.”

“Please remember that every step we take is designed to support you and your child. I am here to answer any questions you may have.”

“I imagine that you may have a wide range of emotions and questions right now. I will try to answer any concerns you may have.”

Regardless of the child’s condition and the predicted prognosis for their development or survival, there are certain phrases that should never be uttered.

“Nothing will come of her/him.”

“She’ll be a vegetable.”

“You’re young, you’ll have healthy children.”

“How poor she is.”

“What a tragedy.”

“He’ll never walk.”

“She’ll never see you.”

Easy-to-understand language

Rozmowy dotyczące stanu zdrowia dziecka to zawsze wielka niewiadoma i ogromny stres. Specjalistyczne, niezrozumiałe słownictwo, zamiast wyjaśniać sytuację, wprowadzają jeszcze większe poczucie zagubienia.

Use simple, understandable language that clearly explains the child’s health condition.
Encourage parents to write down the most important information so that they can refer back to it.
Be honest about the prognosis, but at the same time emphasize the positive effects of treatment and rehabilitation.
Leave parents with hope by showing them that medicine is advancing and increasingly finding appropriate support for children with special needs.

Do not use incomprehensible medical terms that may cause confusion.
Do not use overly negative or pessimistic statements that only increase stress and uncertainty.
Do not make false promises or give unambiguously pessimistic prognoses about the child.

Next steps

Provide parents with clear and specific information about further care for their child before they leave the hospital.
Give parents educational materials, such as a welcome pack, so that they have something to refer back to at any time.
Give parents time to familiarize themselves with the information so that they can better prepare for further care of their child.

Do not leave parents without information about childcare after discharge from the hospital.
Do not assume that they will find the necessary contacts and facilities themselves – they may not know where to look for help.
Do not provide all the information at once in a chaotic manner – too much information can be overwhelming

What do people say about Powitalnik?

"We are very impressed with your work and commitment. We issue Powitalnik in paper form and provide information about the online version. Parents are initially surprised, but after reading the Welcome Guide, they return grateful and reassured. It is a great source of support and assistance. It is also a reliable source of information that we often do not have the time or, in some cases, the full understanding to convey."

"I read it and feel as if someone has written down a large part of my psychoeducational work and packaged it beautifully. I am glad that what parents hear—what they should hear—will now be written down and available to them. This is an extremely important part of caring for them and ensuring the quality of our services. It's almost personalized help, tailored to their needs – that's probably how they'll perceive it."