TY - JOUR
T1 - Medical Decision-Making in Foster Care
T2 - Considerations for the Care of Children With Medical Complexity
AU - Seltzer, Rebecca R.
AU - Raisanen, Jessica C.
AU - da Silva, Trisha
AU - Donohue, Pamela K.
AU - Williams, Erin P.
AU - Shepard, Jennifer
AU - Boss, Renee D.
N1 - Funding Information:
Thank you to Dr. Kathryn Neubauer and Dr. Silvana Barone for their assistance with data analysis. This work was supported by the U.S. Department of Health and Human Services (HHS) under HRSA T32HP10025 (Rebecca Seltzer). This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government. Funding: Dr. Seltzer was supported by the U.S. Department of Health and Human Services (HHS) under HRSA T32HP10025. This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government. The funding source had no role in the study design; collection, analysis, or interpretation of data; the writing of this article; or the decision to submit this article for publication.
Funding Information:
Thank you to Dr. Kathryn Neubauer and Dr. Silvana Barone for their assistance with data analysis. This work was supported by the U.S. Department of Health and Human Services (HHS) under HRSA T32HP10025 (Rebecca Seltzer). This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government. Funding: Dr. Seltzer was supported by the U.S. Department of Health and Human Services (HHS) under HRSA T32HP10025. This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government. The funding source had no role in the study design; collection, analysis, or interpretation of data; the writing of this article; or the decision to submit this article for publication.
Publisher Copyright:
© 2019 Academic Pediatric Association
PY - 2020/4
Y1 - 2020/4
N2 - Objective: To explore how medical decision-making for children with medical complexity (CMC) occurs in the context of foster care (FC). Methods: Together with a medical FC agency, we identified 15 CMC in medical FC and recruited eligible care team members (biological and foster parents, medical FC nurses, caseworkers in medical FC/child welfare, and pediatricians) for each child. Semistructured interviews were conducted, and conventional content analysis was applied to transcripts. Results: Fifty-eight interviews were completed with 2–5 care team members/child. Serious decision-making related to surgeries and medical technology was common. Themes regarding medical decision-making for CMC in FC emerged: 1) Protocol: decision-making authority is dictated by court order and seriousness of decision, 2) Process: decision-making is dispersed among many team members, 3) Representing the child's interests: the majority of respondents stated that the foster parent represents the child's best interests, while the child welfare agency should have legal decision-making authority, and 4) Perceived barriers: serious medical decision-making authority is often given to individuals who spend little time with the child. Conclusions: Medical decisions for CMC can have uncertain risk/benefit ratios. For CMC in FC, many individuals have roles in these nuanced decisions; those with ultimate decision-making authority may have minimal interaction with the child. Pediatricians can assist by clarifying who has legal decision-making authority, facilitating team communication to promote truly informed consent, and serving as a resource to decision-makers. Further research should explore how to adapt the traditional model of shared decision-making to meet the needs of this population.
AB - Objective: To explore how medical decision-making for children with medical complexity (CMC) occurs in the context of foster care (FC). Methods: Together with a medical FC agency, we identified 15 CMC in medical FC and recruited eligible care team members (biological and foster parents, medical FC nurses, caseworkers in medical FC/child welfare, and pediatricians) for each child. Semistructured interviews were conducted, and conventional content analysis was applied to transcripts. Results: Fifty-eight interviews were completed with 2–5 care team members/child. Serious decision-making related to surgeries and medical technology was common. Themes regarding medical decision-making for CMC in FC emerged: 1) Protocol: decision-making authority is dictated by court order and seriousness of decision, 2) Process: decision-making is dispersed among many team members, 3) Representing the child's interests: the majority of respondents stated that the foster parent represents the child's best interests, while the child welfare agency should have legal decision-making authority, and 4) Perceived barriers: serious medical decision-making authority is often given to individuals who spend little time with the child. Conclusions: Medical decisions for CMC can have uncertain risk/benefit ratios. For CMC in FC, many individuals have roles in these nuanced decisions; those with ultimate decision-making authority may have minimal interaction with the child. Pediatricians can assist by clarifying who has legal decision-making authority, facilitating team communication to promote truly informed consent, and serving as a resource to decision-makers. Further research should explore how to adapt the traditional model of shared decision-making to meet the needs of this population.
KW - children with medical complexity
KW - foster care
KW - medical decision-making
KW - shared decision-making
UR - http://www.scopus.com/inward/record.url?scp=85077926048&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85077926048&partnerID=8YFLogxK
U2 - 10.1016/j.acap.2019.11.018
DO - 10.1016/j.acap.2019.11.018
M3 - Article
C2 - 31809809
AN - SCOPUS:85077926048
SN - 1876-2859
VL - 20
SP - 333
EP - 340
JO - Academic pediatrics
JF - Academic pediatrics
IS - 3
ER -