The Practical Application of the Individual Care Plan for Pediatric Palliative Care: A Mixed-Method Study
Chantal Y. Joren,
Judith L. Aris-Meijer,
Leontien C. M. Kremer,
Suzanne C. Hofman,
Hester Rippen-Wagner,
Ria Slingerland-Blom,
Chantal van der Velden,
Meggi A. Schuiling-Otten,
Project Team ICP,
A. A. Eduard Verhagen,
Marijke C. Kars
Affiliations
Chantal Y. Joren
University of Groningen, University Medical Center Groningen, Beatrix Children’s Hospital, Hanzeplein 1, 9713 GZ Groningen, The Netherlands
Judith L. Aris-Meijer
University of Groningen, University Medical Center Groningen, Beatrix Children’s Hospital, Hanzeplein 1, 9713 GZ Groningen, The Netherlands
Leontien C. M. Kremer
Princess Maxima Centre for Pediatric Oncology, Heidelberglaaan 25, 3584 CS Utrecht, The Netherlands
Suzanne C. Hofman
University Medical Center Utrecht, Wilhelmina Children’s Hospital, Lundlaan 6, 3584 EA Utrecht, The Netherlands
Hester Rippen-Wagner
Dutch Foundation Child and Hospital, 3527 GV Utrecht, The Netherlands
Ria Slingerland-Blom
Dutch Centre of Expertise in Children’s Palliative Care, Mercatorlaan 1200, 3528 BL Utrecht, The Netherlands
Chantal van der Velden
Dutch Centre of Expertise in Children’s Palliative Care, Mercatorlaan 1200, 3528 BL Utrecht, The Netherlands
Meggi A. Schuiling-Otten
Dutch Centre of Expertise in Children’s Palliative Care, Mercatorlaan 1200, 3528 BL Utrecht, The Netherlands
Project Team ICP
University Medical Center Groningen, Beatrix Children’s Hospital, Hanzeplein 1, 9713 GZ Groningen, The Netherlands
A. A. Eduard Verhagen
University of Groningen, University Medical Center Groningen, Beatrix Children’s Hospital, Hanzeplein 1, 9713 GZ Groningen, The Netherlands
Marijke C. Kars
Center of Expertise in Palliative Care Utrecht, Julius Center of Health and Primary Care, UMC Utrecht, Universiteitsweg 100, 3584 CG Utrecht, The Netherlands
Background/Objective: The Individual Care Plan (ICP) for pediatric palliative care was developed to provide person-centered care for the individual child and family. Currently, a lack of clarity remains regarding the use and function of the ICP in daily practice. To further implement the ICP, it is important to identify how parents and healthcare professionals use the ICP and which obstacles or benefits are experienced. Methods: This mixed-method study used qualitative interviews and quantitative questionnaires in (bereaved) parents and healthcare professionals with experience with the ICP. Results: Parents and healthcare professionals used the ICP to establish a joint plan for care and treatment of the child to coordinate care and to achieve child- and family-centered care. This includes both obstacles that complicate achieving care goals and benefits that make it easier. Furthermore, responsibilities for the ICP remained unclear, and there was no set point in the illness trajectory for drawing up the ICP. Conclusions: Parents and healthcare professionals use the ICP as intended. However, uncertainties regarding timing, roles and responsibilities prevent optimal use of the ICP. Agreements on timing and responsibilities are needed for further ICP implementation in daily pediatric palliative care practice.
