TY - JOUR
T1 - Age-Appropriate Advance Care Planning in Children Diagnosed with a Life-Limiting Condition
T2 - A Systematic Review
AU - Brunetta, Julie
AU - Fahner, Jurrianne
AU - Legemaat, Monique
AU - van den Bergh, Esther
AU - Krommenhoek, Koen
AU - Prinsze, Kyra
AU - Kars, Marijke
AU - Michiels, Erna
N1 - Funding Information:
Funding: This research was funded by Porticus grant number 100035_I5258294.
Publisher Copyright:
© 2022 by the authors. Licensee MDPI, Basel, Switzerland.
PY - 2022/6/3
Y1 - 2022/6/3
N2 - Pediatric advance care planning (pACP) is an important strategy to support patient-centered care. It is known to be difficult, yet paramount, to involve the child in pACP while adjusting treatment to age and the corresponding stage of development. This systematic review was aimed to evaluate the age appropriateness of pACP interventions by assessing their characteristics, content, and evidence. CINAHL, Embase and MEDLINE were searched from 1 January 1998 to 31 August 2020 in order to identify peer-reviewed articles containing strategies and tools to facilitate pACP in both children (0-18 years) with life-limiting conditions and their families. An assessment of quality was performed using Cochrane tools and COREQ. The full protocol is available as PROSPERO CRD42020152243. Thirty-one articles describing 18 unique pACP tools were included. Most tools were developed for adolescents and young adults. In most cases, the interventions tried to assess the child's and family's preferences concerning their current and future hopes, wishes, and goals of the care. This was aimed to enhance communication about these preferences between children, their families, and health-care providers and to improve engagement in pACP. The relevance of an age-appropriate approach was mentioned in most articles, but this was mainly implicit. Seven articles implemented age-appropriate elements. Six factors influencing age appropriateness were identified. Tools to support pACP integrated age-appropriate elements to a very limited extent. They mainly focused on adolescents. The involvement of children of all ages may need a more comprehensive approach.
AB - Pediatric advance care planning (pACP) is an important strategy to support patient-centered care. It is known to be difficult, yet paramount, to involve the child in pACP while adjusting treatment to age and the corresponding stage of development. This systematic review was aimed to evaluate the age appropriateness of pACP interventions by assessing their characteristics, content, and evidence. CINAHL, Embase and MEDLINE were searched from 1 January 1998 to 31 August 2020 in order to identify peer-reviewed articles containing strategies and tools to facilitate pACP in both children (0-18 years) with life-limiting conditions and their families. An assessment of quality was performed using Cochrane tools and COREQ. The full protocol is available as PROSPERO CRD42020152243. Thirty-one articles describing 18 unique pACP tools were included. Most tools were developed for adolescents and young adults. In most cases, the interventions tried to assess the child's and family's preferences concerning their current and future hopes, wishes, and goals of the care. This was aimed to enhance communication about these preferences between children, their families, and health-care providers and to improve engagement in pACP. The relevance of an age-appropriate approach was mentioned in most articles, but this was mainly implicit. Seven articles implemented age-appropriate elements. Six factors influencing age appropriateness were identified. Tools to support pACP integrated age-appropriate elements to a very limited extent. They mainly focused on adolescents. The involvement of children of all ages may need a more comprehensive approach.
KW - adolescents
KW - advance care planning
KW - age-appropriate
KW - cognitive functions
KW - development
KW - interventions
KW - life-limiting conditions
KW - palliative care
KW - pediatrics
KW - young adults
UR - http://www.scopus.com/inward/record.url?scp=85131896369&partnerID=8YFLogxK
U2 - 10.3390/children9060830
DO - 10.3390/children9060830
M3 - Review article
C2 - 35740767
SN - 2227-9067
VL - 9
JO - Children (Basel, Switzerland)
JF - Children (Basel, Switzerland)
IS - 6
M1 - 830
ER -