Parental Experiences of Information Within Pediatric Oncology

Abstract

901 87 Umeå, Sweden. +46 (0)90-786 91 54, anders.ringner@nurs.umu.se. Ringnér et al., Parental experiences of information within pediatric oncology 2 AbstractParents of children with cancer use information to create knowledge about their child's disease. Information can help parents reduce chaos and create a feeling of control, but there are often obstacles to its acquisition, which has been described as similar to learning a new language. The purpose of this study was to describe parents' experiences of acquiring and using information to create knowledge about their child's cancer during the course of the illness. We used qualitative content analysis on data from focus groups and individual interviews with 14 parents of children with cancer. Two themes were constructed: Feeling acknowledged as a person of significance included feeling safe and secure in spite of uncertainty, having one's hopes supported, and getting relief from other families' experiences. Feeling like an unwelcome guest included feeling abandoned at important milestones, feeling forced to nag for information, and feeling burdened by the obligation to inform others. Parents may need extra attention at important milestones such as treatment cessation, with information meetings grounded in the parents' own needs.

Parent‐centered communication at time of pediatric cancer diagnosis: A systematic review

“…The role of communication is important in the pediatric cancer setting where patients and families need to understand complex information in order to make critical medical decisions. Empathetic communication is particularly important at the time of a child's diagnosis of cancer, when parents experience significant levels of stress and anxiety that affect their understanding of the medical information provided . Unlike other points in the cancer experience where parents make major decisions about their child's cancer therapy (relapse, end‐of‐life), the diagnostic consultation has a more complex agenda.…”

Benefits of a Brief Therapeutic Conversation Intervention for Families of Children and Adolescents in Active Cancer Treatment

“…Parents of children and adolescents with cancer have indicated that information about the cancer was critical in helping them to cope emotionally with the situation (Ringnér et al, 2011a) and to reduce chaos and create a feeling of control (Ringnér et al, 2011b). Therefore, when designing a brief therapeutic conversation intervention for families of children in active cancer treatment, the relationship between how the information is delivered and in what way parents are offered the emotional and psychosocial support is crucial.…”

Protecting Family Interests: An Interview Study with Foreign-Born Parents Struggling On in Childhood Cancer Care

“…It is of great importance to keep parents sufficiently informed, especially because, within paediatric oncology, parents are not currently entirely satisfied with the amount and timing of information [20, 21]. Furthermore, lack of information to parents in paediatric cancer care leads to a feeling of being unwelcome and abandoned [22]. Parents and patients often receive an insufficient level and amount of information, leading to conflict in care [23].…”