Accessing the Lived Experiences of Children with Illness in Sweden for Health Care Research

Background: Children are a relatively marginalized group when doing research in the context of illness, young children particularly so. This even though children can and should contribute their point of view in providing evidence-based care. This article contributes the experiences of Nurse Researchers in gathering research data in Sweden on the lived experiences of children undergoing needle-related medical procedures, living with home mechanical ventilation or undergoing treatment for cancer. Methods: Nine published articles from four unique Swedish PhD dissertations in Caring Science formed the basis for the present paper where various open and critical qualitative approaches for gathering data were used. Results: Accessing and interpreting the lived experiences of ill children in healthcare research presents methodological, ethical, and cultural challenges. As with health care contexts in other countries, capturing the ill child's experiences in Sweden requires several different methods. Health researchers in Sweden must navigate a complex landscape of communication barriers, emotional and psychological challenges, and structural issues within the healthcare system to effectively access and understand the lived experiences of children. Conclusions: This paper adds to the knowledge base of research with a focus on gathering the experiences of children with illness within a Swedish health care context. These insights underscore the importance for all researchers of using child-friendly, inclusive methods to understand children's lived experiences thus ensuring their voices are heard and respected in health research. Children's and families' inability to speak the native language of a country cannot be a hinder for inclusion, but rather be encouraged.