Get out of the silence with MOMO

800 children and young people with a life-shortening disease live in the greater Vienna area. Around 100 of these young patients are continuously cared for by Vienna's mobile children's hospice and children's palliative care team, MOMO. The positive effects of this support work far beyond those affected and their families, as scientists from the Vienna University of Economics and Business have discovered.  

MOMO has accompanied and supported more than 350 seriously ill children and young people in the seven years since it was founded. The children's hospice and children's palliative team are currently visiting around 100 families in Vienna. "Our most important goal is to enable the little patients to live at home with their families through the best possible medical and therapeutic support," explains Dr. Martina Kronberger-Vollnhofer, founder and head of MOMO. The organization is multi-professional so that this can succeed. Pediatricians and palliative medicine specialists, health and nurses, social workers, health psychologists, physiotherapists and music therapists, a pastor and 48 volunteer hospice attendants support the families medically, therapeutically, psychosocially and in their everyday tasks.  

"When we talk about child palliative and child hospice work, we are talking about lifelong accompaniment that can sometimes only last a few weeks, but usually many months, even years," emphasizes Kronberger-Vollnhofer. "It's about togetherness, about mutual strengthening, about touching and being touched, it's about the many good moments in everyday life, which of course there are despite all the difficulties."

Child hospice work enriches society

The scientists at the Competence Center for Nonprofit Organizations and Social Entrepreneurship at the Vienna University of Economics and Business have made this systemic basic idea the starting point for their evaluation. Through personal conversations combined with an online survey, they recorded the social added value that results from the work of the children's hospice and children's palliative team MOMO. The researchers focused on the one hand on pediatric hospice and palliative care in Vienna, on the other hand on specific groups of people and organizations. 

"Our analysis clearly shows that the positive effects of the work of MOMO have an impact far beyond the directly affected group of families," emphasize the authors Flavia-Elvira Bogorin, Eva More-Hollerweger and Daniel Heilig in unison. MOMO plays a central role in the overall system of pediatric hospice and palliative care and makes a significant contribution to maintaining the system. 

"What was striking, however, was the strong stigmatization of the term palliative and hospice in general and the high inhibition threshold with regard to children in particular," emphasizes Eva More-Hollerweger. "Talking about seriously ill children is socially avoided."

We must look to improve the lives of seriously ill children

Martina Kronberger-Vollnhofer and her team experience this almost every day. She is therefore convinced: “We need better access to illness and death, and we need a different perspective on what we consider normal. For MOMO families, living with the disease is part of everyday life. Our common task is to find out how much is possible despite this disease and how we can make life easier and more beautiful for everyone. "

That is why Kronberger-Vollnhofer advocates increased participation of seriously ill children in social life. “You have just as much a right to be seen and accepted as all other children.” In order to create this social space, she wants to intensify the public discussion on this topic. After all, the number of chronically ill children and thus the need for palliative care support is increasing year by year. Due to the enormous medical progress of the last few years, more and more children who are chronically ill from birth and require a lot of care, can live longer with their disease. 

“So there will be more and more families who need support from organizations like MOMO. The central result of the study was that MOMO contributes to the families concerned having a better quality life, because their needs are dealt with very individually and with great know-how, ”says More-Hollerweger. "For this reason, too, it is important to free the issues of pediatric palliative medicine and children's hospice from their stigma of exclusively terminal care."

A greater awareness of the need for children's hospice places and palliative medical care for children and adolescents could also lead to more doctors and nurses deciding to become involved in this important area. "We are already urgently looking for colleagues with specialist training to expand our medical and nursing team," emphasizes Kronberger-Vollnhofer. 

Conversations with doctors and nurses from the MOMO team confirm a very high level of job satisfaction, according to the result of the evaluation. But not only they, also many other groups of people and organizations feel and experience positive effects through the commitment of the children's hospice and children's palliative team MOMO.

For more information about MOMO Vienna's mobile children's hospice and children's palliative team
www.kinderhospizmomo.at
Susanne Senft, susanne.senft@kinderhospizmomo.at