Children and young people’s strategies to access information during a family member’s critical illness

Abstract

Including children and young people in family research increases study complexity and as a consequence they are excluded from most studies and little is known about their experiences with critical illness in their families. The overall study aimed at exploring families' experiences with critical illness in intensive care and nurses' perception of families. This article presents findings in relation to one specific aspect, namely how children accessed information while a family member was in ICU. Constructivist grounded theory. Focus groups with families and nurses. The study was organised in two phases (1) family group interviews and (2) focus groups with nurses. Reported data originate from nine family interviews (12 adults, 12 children/ young people). Interviews were recorded, transcribed verbatim and imported into NVivo for data management and analysis. The principal approach in grounded theory, the constant comparative method, was followed. The findings suggest that the themes 'adults controlling information', 'keeping normality in life' and 'fishing for information' reflected the children and young people's experiences in accessing information during a critical illness in their families. The activities children and young people described, which constructed these themes appeared to result directly from issues of clinical and functional uncertainty. The strategies children and young people developed to access information about their family member's critical illness emerged in the context of power asymmetries in families. It is suggested that including young people in critical illness situations is crucial to supporting them through a time of uncertainty. Being able to visit their loved one in ICU was an important means to access information for young people in this study. Parents and nurses need to reflect on young people's ability and right to participate by being open and honest with children of all ages.