Family Relational Experiences During Major Transitions with a Chronic Illness

Although health care transitions have received some attention in the literature, few researchers have emphasized family relational experiences and communication during major changes while living with a chronic illness. The purpose of this phenomenological study was to understand the lived experience of parents and their adult children while transitioning from pediatric to adult care of a chronic illness. The bio-psychosocial theory, family systems theory, and attachment theory established the context for this study. A criterion-based sampling technique and snowball sampling were used to recruit 7 parents and 6 of their adult children aged 18 to 30 years who were diagnosed with cystic fibrosis or congenital heart disease, and who had either completed or were in the process of completing the transition from pediatric to adult healthcare. Semi-structured interviews were conducted, and content analysis was used to code and analyze themes that emerged from the experiences of participants. The themes that were identified included that parents were instrumental in maintenance of treatments during high risk periods of adolescence, healthy parent and child relations included collaboration that accommodated autonomy, and that early coaching helped reduce parental anxiety about non-adherence while increasing the self-efficacy of the child. This study contributes to positive social change by informing the design of current procedures to transition young adults with chronic illness by recommending flexibility in negotiations, early education, shadowing between facilities, and incorporating evidence-based practice based on feedback from each family member