Development and Application of Advance Care Planning Workbooks to Facilitate Communication with Children and Adolescent Patients: A Pilot Test

Abstract

Purpose This study presents the process of designing workbooks for advance care planning appropriate for the Korean cultural setting and describes actual case studies. Methods This study focused on single inductive case studies of the utilization of an advance care planning workbook and recruited individual participants. Results The workbook for adolescents contained six sessions and the workbook for children contained seven sessions. The workbook sessions led to four major discoveries 1) considering the Korean cultural context, discussions on life and death must be held indirectly; 2) the role of the counselor as a supporter is crucial for the workbook to be effective; 3) the workbook must be accessible regardless of the seriousness of the illness; and 4) patients must be able to make their own choice between the workbook versions for children and adolescents. Six facilitating factors improved engagement 1) the role of the counselor as a supporter; 2) building trust with the patient; 3) affirming freedom of expression on topics the patient wished to avoid talking about; 4) having discussions on what private information to keep secret and to whom the information can be disclosed; 5) discovering and regularly discussing relevant topics; and 6) regular communication and information-sharing with the patient’s medical service providers. Conclusion It is necessary to build on actual case studies regarding workbooks for children and adolescents in order to expand the usage of these workbooks to all relevant medical institutions in Korea.

Effect of the Family-Centered Advance Care Planning for Teens with Cancer Intervention on Sustainability of Congruence About End-of-Life Treatment Preferences

“…8 Various models of pACP for adolescents with a serious illness are being developed, 9 , 10 , 11 , 12 , 13 along with tools to guide conversations. 14 , 15 , 16 …”

“…8 Various models of pACP for adolescents with a serious illness are being developed, [9][10][11][12][13] along with tools to guide conversations. [14][15][16] Although ongoing conversations are recommended, 17,18 optimal timing has not been empirically demonstrated. 19,20 Timing is important for adolescents with cancer, the leading cause of diseaserelated death in this age group.…”

“…Key elements of pACP in this population include (1) giving adolescents a voice in their own end-of-life care, (2) initiating early pACP conversations to close gaps in understanding, (3) documenting advance directives in the electronic health record (EHR), and (4) sharing pACP conversations with the treating clinicians to support communication before a medical crisis . Various models of pACP for adolescents with a serious illness are being developed, along with tools to guide conversations …”

Advance care plan discussion among parents of children with cerebral palsy

“…The advance care plan (ACP) is an important part of care for children with life-limiting illnesses and is widely recommended among paediatric associations in high-income countries. [1][2][3][4][5][6] Forming a substantial cohort of children with life-limiting illnesses are those with severe neurological impairment including bilateral cerebral palsy (CP). In a broad sense, ACP is a process that involves exploring the patient's and family's views on the disease progression and preferences for treatment along with their wishes, hopes, and goals of care throughout their illness trajectory.…”

“…The advance care plan (ACP) is an important part of care for children with life‐limiting illnesses and is widely recommended among paediatric associations in high‐income countries 1–6 . Forming a substantial cohort of children with life‐limiting illnesses are those with severe neurological impairment including bilateral cerebral palsy (CP).…”