Focus on public contribution in U-CARE's research projects

Mattias Bergqvist, Ida Österman Menander och Louise von Essen

Focus on public contribution in research. Mattias Bergqvist, Ida Österman Menander and Louise von Essen all contribute to public contribution in their respective roles.

Public contribution is at the core of all research within U-CARE. Public contribution in research is about the public actively participating in research, for example by giving opinions on how a research project should be carried out. Within U-CARE, people with lived experience play an active role in both planning and conducting our projects.

CHANGE: Evaluation of a self-help programme for parents of children treated for cancer

Föräldrakoordinator Mattias Bergqvist

Parent coordinator Mattias Bergqvist.

In the project CHANGE, the self-help programme EJDeR will be evaluated in terms of clinical benefit and cost-effectiveness. EJDeR aims to reduce anxiety and depression in parents of children who have been treated for cancer, and has been developed together with parents of children treated for cancer.

An advisory group of parents of children who have been treated for cancer contributes, among other things, with ideas on how the programme should be evaluated and how study participants should be recruited. In a separate study, the group's contribution to the project will be evaluated.

Mattias Bergqvist is a parent of a child who has been treated for cancer. Today, he is involved as coordinator of the advisory group. He has previously collaborated with our research group and believes that it is important to involve people with lived experience in the research process.

In my role, I act as a bridge between the research group and the parents. I believe that I, who have been in a similar situation, can reduce the communication gap that can sometimes arise between researchers and those the research concern, explains Mattias Bergqvist.

INVOLVERA: Adaptation of a support programme for people with dementia

Forskningsassistent Ida Österman Menander

Research assistant Ida Österman Menander.

In the INVOLVERA project, a support programme for people with dementia and depression developed in the U.K. is adapted to the Swedish context. A public advisory group of informal caregivers of people with dementia plays an important role in adapting the programme, for example by providing feedback on illustrations used in the programme.

Research assistant Ida Österman Menander believes that the informal caregivers' participation strengthens the quality of the research:

The public advisory group contributes with perspectives that we in the research group sometimes lack. I think their participation increases the chance that the programme will actually be used.

GuardiansCan: Mobile-based support for guardians in Tanzania

Professor Louise von Essen

Professor Louise von Essen is the principal investigator of GuardiansCan.

GuardiansCan is a collaborative project between U-CARE and Muhimbili National Hospital in Dar es Salaam, Tanzania. The goal of the project is to increase guardians’ adherence to children's cancer treatment, using a mobile-based support. An advisory group of guardians provides feedback on different aspects such as the recruitment of study participants and what the support should contain.

Professor Louise von Essen is the principal investigator of the project. She emphasises the importance of involving guardians:

By involving guardians in our research, we aim to ensure, among other things, that the mobile-based support will meet their needs. We have successfully recruited a diversity of guardians with different relationships to the children, including mothers, grandmothers and uncles. The diversity of the group strengthens the project’s relevance, explains Louise von Essen.

Miro Anter

FOLLOW UPPSALA UNIVERSITY ON

facebook
instagram
twitter
youtube
linkedin