Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2023 Apr;7(1):e001866.
doi: 10.1136/bmjpo-2023-001866.

Shared decision-making for children with medical complexity in community health services: a scoping review

Sonja Jacobs  1 , Nathan Davies  2 , Katherine L Butterick  3 , Jane L Oswell  3 , Konstantina Siapka  3 , Christina H Smith  4
Affiliations

Shared decision-making for children with medical complexity in community health services: a scoping review

Sonja Jacobs et al. BMJ Paediatr Open. 2023 Apr.

Abstract

Background: Children with medical complexity is an increasing population whose parents and healthcare providers face multiple decisions. Shared decision-making is a process where patients, their families and healthcare providers collaborate to make decisions based on clinical evidence and informed preferences of the family. Shared decision-making has benefits for the child, family and healthcare providers, including improved parental understanding of the child's difficulties, increased participation, improved coping skills and more efficient healthcare use. It is, however, poorly implemented.

Aims and methods: A scoping review was conducted to explore shared decision-making for children with medical complexity in community health services, including how shared decision-making is defined in research, how it is implemented, including barriers and facilitators and recommendations for research. Six databases were systematically searched for papers published in English up to May 2022: Medline, CINAHL, EMBASE, PsycINFO, PubMed, Cochrane Database of Systematic Reviews and sources of grey literature. The review is reported according to the Preferred Reporting Items for Scoping Reviews.

Results: Thirty sources met the inclusion criteria. Most factors can either be a facilitator or barrier to shared decision-making depending on the context. Two significant barriers to shared decision-making in this population include uncertainty about the child's diagnosis, prognosis, and treatment options and the presence of hierarchy and power imbalance during clinical encounters with healthcare providers. Further influencing factors include continuity of care, the availability of accurate, accessible, adequate, and balanced information and the interpersonal and communication skills of parents and healthcare providers.

Conclusion: Uncertainty about diagnosis, prognosis and treatment outcomes for children with medical complexity are additional challenges to the known barriers and facilitators to shared decision-making in community health services. Effective implementation of shared decision-making requires advancement of the evidence base for children with medical complexity, reducing power imbalance in clinical encounters, improving continuity of care, and improving the availability and accessibility of information resources.

Keywords: Health services research.

PubMed Disclaimer

Conflict of interest statement

Competing interests: No, there are no competing interests.

Figures

Figure 1
Figure 1
PRISMA flow chart. PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses; SDM, shared decision-making.
Figure 2
Figure 2
Elements of shared decision-making (SDM) for children with medical complexity. CMC, children with medical complexity; SDM, shared decision-making.
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Cohen E, Kuo DZ, Agrawal R, et al. . Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics 2011;127:529–38. 10.1542/peds.2010-0910 - DOI - PMC - PubMed
    1. Birchley G, Thomas-Unsworth S, Mellor C, et al. . Factors affecting decision-making in children with complex care needs: a consensus approach to develop best practice in a UK children’s Hospital. BMJ Paediatr Open 2022;6:e001589. 10.1136/bmjpo-2022-001589 - DOI - PMC - PubMed
    1. Lin JL, Cohen E, Sanders LM. Shared decision making among children with medical complexity: results from a population-based survey. J Pediatr 2018;192:216–22. 10.1016/j.jpeds.2017.09.001 - DOI - PMC - PubMed
    1. Buchanan F, Lai C, Cohen E, et al. . Decision-Making for parents of children with medical complexities: activity theory analysis. J Particip Med 2022;14:e31699. 10.2196/31699 - DOI - PMC - PubMed
    1. Gravel K, Légaré F, Graham ID. Barriers and facilitators to implementing shared decision-making in clinical practice: a systematic review of health professionals’ perceptions. Implement Sci 2006;1:16. 10.1186/1748-5908-1-16 - DOI - PMC - PubMed

Publication types