Grounded theory approach to the process of young caregiving from the perspectives of former young caregivers, current young caregivers, and their chronically ill parents

With the advent of increasing survival rates related to catastrophic illness, disability, and chronic illness, children 18 years old or younger are being called upon to serve as caregivers. This study sought to explain the social process of young caregiving and was guided by the following three questions: (a) How does the phenomenon of young caregiving begin? (b) How is young caregiving sustained over time? and (c) How does young caregiving end? A qualitative grounded theory study design was used. Nineteen participants were interviewed: (a) 6 chronically ill parents, (b) 5 young caregivers, and (c) 9 former young caregivers. (One participant represents the viewpoints of an ill parent and a former young caregiver.) Data were collected by using a semistructured interview schedule to obtain data for initial comparison and theme identification in 13 initial interviews. Open-ended questions, based upon emergent themes, were used in subsequent interviews. In order to be included in the study, all participants had to be at least 12 years old or older and have current or past involvement of at least 6 months with caregiving activity to a parent. Parent participants were included if they experienced at least 6 months of functional impairment and relied upon a child for caregiving assistance. Grounded theory methods of constant comparative analysis and theoretical sampling were used to analyze audiotaped interviews and verbatim interview transcripts. Analysis resulted in two core variables: (a) 'doing the best you could with what you had' from a chronically ill parent's perspective and (b) 'doing what needed to be done' from a young caregiver's perspective. Three explanative conceptual maps of action are offered that explain individual and interactional movement through the process. Three key concepts that capture the action of all three maps are the following: (a) moving from certainty to uncertainty, (b) accommodating a new reality, and (c) making peace with change. Implications are discussed from the perspectives of (a) nursing practice, (b) nursing research, and (c) educational settings.