The transition process between child and adolescent mental services and adult mental health services for patients with anorexia nervosa: a qualitative study of the parents' experiences

Plain English summary Adolescents with anorexia nervosa (AN) who receive care from Child and Adolescent Mental Health Services (CAMHS) often need further treatment from Adult Mental Health Services (AHMS). This study explores the transition between CAMHS and AHMS for parents of adolescents with AN in a naturalistic public mental health-care setting. Our study identified six themes concerning the transition between CAMHS and AMHS, based on parents' experiences of the process and what they considered influenced the transition. In general, parents and patients are both unprepared for the sudden discharge from CAMHS when the patient turns 18 years old. The transition is often characterized by a lack of continuity, leading to deterioration and relapses among patients. The lack of involvement and information parents experience in the transition causes distress, and parents have overwhelming multifaceted responsibilities in the transition period. Parents view knowledge to be the key to a successful transition, and they are stressed and need support in the transition. Background Patients with Anorexia Nervosa (AN) often experience the transition between Child and Adolescent Mental Health Services (CAMHS) and Adult Mental Health Services (AMHS) as challenging. This period tends to have a negative influence on the continuity of care for the adolescents and represents a demanding and difficult period for the parents. To our knowledge, no previous study has explored the parents' experience with the transition from CAMHS to AMHS. Therefore, this qualitative study examines how parents experience the transition process from CAMHS to AMHS. Methods In collaboration with a service user with carer experience, qualitative interviews were conducted with 10 parents who had experienced the transition from CAMHS to AMHS, some from outpatient care and others from both in- and outpatient mental care units in Norway. All had some experience with specialized eating disorder units. The interviews were analyzed with a Systematic Text Condensation (STC) approach. Service users' perspectives were involved in all steps of the research process. Results Six categories represent the parents' experiences of the transition: (1) the discharge when the child turns 18 years old is sudden; (2) the lack of continuity is often followed by deterioration and relapses in the patient; (3) the lack of involvement and information causes distress; (4) knowledge - an important factor for developing a trusting relationship between parents` and clinicians`; (5) parents have overwhelming multifaceted responsibilities; and (6) parents need professional support. Conclusion Improving the transition by including parents and adolescents and preparing them for the transition period could ease parental caregiving distress and improve adolescents' compliance with treatment. Clinicians should increase their focus on the important role of parents in the transition process. The system should implement routines and guidelines to offer caregivers support and guidance during the transition process.