Evaluation showed that stakeholders valued the support provided by the Implementing Pediatric Advance Care Planning Toolkit

Abstract

Aim: This study described the development, and pilot evaluation, of the Implementing Pediatric Advance Care Planning Toolkit (IMPACT).

Methods: Key elements of paediatric advance care planning (ACP) were defined using a systematic review, a survey of 168 paediatricians and qualitative studies of 13 children with life-limiting conditions, 20 parents and 18 paediatricians. Participants were purposively recruited from six Dutch university hospitals during September 2016 and November 2018. Key elements were translated into intervention components guided by theory. The acceptability of the content was evaluated by a qualitative pilot study during February and September 2019. This focused on 27 children with life-limiting conditions from hospitals, a hospice and home care, together with 41 parents, 11 physicians and seven nurses who cared for them.

Results: IMPACT provided a holistic, caring approach to ACP, gave children a voice and cared for their parents. It provided information on ACP for families and clinicians, manuals to structure ACP conversations and training for clinicians in communication skills and supportive attitudes. The 53 pilot study participants felt that IMPACT was appropriate for paediatric ACP.

Conclusion: IMPACT was an appropriate intervention that supported a holistic approach towards paediatric ACP, focused on the child's perspective and provided care for their parents.

Keywords: advance care planning; care goals; communication; decision-making; life-limiting conditions.