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

Introduction

Children with medical complexity (CMC) have needs in four domains, namely (1) substantial family-identified healthcare and special educational needs, (2) one or more severe and potentially lifelong chronic conditions, (3) limitations to body structure and function, performance of activities and participation that may require technological assistance such as feeding tubes and (4) high projected healthcare use including the involvement of multiple subspecialties.1 These children are increasing in number.1 2 Parents and healthcare providers (HCPs) for CMC face multiple, complex decisions throughout their childhood including decisions about tube feeding, mechanical ventilation, medications and surgery.1 3 4

Shared decision-making (SDM) is an evidence-based approach that is an essential part of patient-centred care.5–7 It is a process where parents, as surrogate decision-makers for their child, and HCPs work in partnership to make decisions based on clinical evidence and family preferences.7–10 This approach is supported by policy makers and regulatory bodies nationally and internationally.5–10 The benefits for patients, families and HCPs include improved patient or carer knowledge and understanding, reduced decisional conflict, increased participation and engagement in care, improved coping skills, and efficient use of healthcare resources.5 6 8 10 SDM is, however, poorly defined due to the interpretive nature of what is meant by ‘shared’,6 11 with fundamental differences in how patients, carers and HCPs understand the purpose of and their role in SDM.6 8 12–14

The difference between parental and HCP approaches to decision-making often result in poor implementation of SDM. HCPs base their decisions on clinical and empirical evidence,8 which is often lacking for CMC.1 15 Parents consider the social, emotional and psychological impact of decisions on their child, their family and cultural and religious beliefs in addition to potential clinical outcomes.8 11 13 Parental decisions about what is ‘good enough’ for their child with medical complexity are often more intensely scrutinised by HCPs than for non-medically complex children, with a lack of awareness or importance given to the impact of decisions on the family.8 11 13–16 Clinical uncertainty combined with complex family dynamics require HCPs to swap traditional hierarchical and paternalistic approaches to decision-making, where decisions are made based on clinical information and empirical evidence,5 8 11 12 15 17 for an approach that allows parental collaboration and discretion in decision-making.11 15

The personal and healthcare cost of poor implementation of SDM is amplified in the CMC population due to their significant healthcare use. Understanding factors impacting SDM for CMC will help to improve medical and developmental outcomes, quality of life of children and families and effective use of healthcare resources.5 8 10

This scoping review aimed to explore the landscape of SDM for CMC in community health services.

The objectives for this review were to:

1. Explore how SDM is defined in research.

2. Understand to what extent SDM is implemented for CMC in community health services.

3. Consider the differences in SDM between ethnic groups.

4. Identify the barriers and facilitators to SDM for CMC.

5. Provide recommendations for future research.

Methods

A scoping review was conducted following the Joanna Brigs Institute (JBI) manual for evidence synthesis18–20 and was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews.21

Selection of evidence

Identified sources were uploaded to Covidence systematic review software and duplicates removed. Titles and abstracts were screened against criteria by the first author and 33% was screened by second authors. Full texts of potentially relevant sources were assessed against inclusion criteria by the first author and 33% by second authors. Reasons for exclusion of sources at full text were recorded. Disagreements between the reviewers were resolved through discussion and a third reviewer if needed. The result of the search is outlined in a PRISMA flow chart (figure 1).

Figure 1

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PRISMA flow chart. PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses; SDM, shared decision-making.

Results

Definition of SDM for CMC

Eighteen articles defined or described SDM (figure 2). A collaborative approach and equal partnership between parents and HCPs were most frequently noted as key elements of SDM. Most other elements offered guidance on how to achieve this partnership. Three sources referenced the impact of uncertainty of prognosis and treatment outcomes for CMC on this collaborative process.

Figure 2

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Elements of shared decision-making (SDM) for children with medical complexity. CMC, children with medical complexity; SDM, shared decision-making.

Discussion

This scoping review explored the landscape of SDM for CMC in community health services. SDM is important in this population due to the complex long-term nature of their health conditions and high healthcare use. Like previous reviews,6 10 this review found no unifying definition for SDM in the literature. All sources highlighted the importance of SDM; however, few studies explored the effectiveness of SDM for CMC, especially in community health settings. This might in part be due to the varying nature of service delivery models in different countries. The lack of implementation research is a shortcoming in paediatric research generally10 with evidence mainly pertaining to adult care.5 17 Limited research exists about SDM for CMC who are from a minority ethnic or disadvantaged background. Three studies showed poorer implementation in black and Hispanic communities in the USA.35 36 38 This is congruent with evidence from a systematic review that included studies from 15 countries, showing that adults from minority ethnic or disadvantaged backgrounds experience more barriers to SDM.53 Research shows that SDM interventions can significantly improve the outcomes for disadvantaged adult patients, including increased knowledge and participation in decision-making.54 It is, therefore, not surprising that exploring SDM in diverse communities was one of the most cited research recommendations.

Many influencing factors could either be barriers or facilitators to SDM depending on the context.5 7 53 Most factors identified in this review are situated in the organisational level where HCPs can influence change. This include organisational and personal understanding of and commitment to SDM, interpersonal skills that build trust and respect, active listening, cultural sensitivity, empowerment of families to be active team members and to share their values, opinions and fears, continuity of care, access to the right HCPs and enough time in consultations. Previous studies found that the top patient-reported barriers to SDM include disorganised healthcare systems and the quality of interactions with HCPs,53 whereas the main barriers identified by HCPs are lack of time and motivation to pursue SDM and a perception that patients do not want to engage in decision-making.5 7 There is, however, an awareness among HCPs that good communication and coordination of care can improve SDM.2 To improve implementation of SDM it should be viewed as a culture within organisations and a way of interacting with every service user rather than another clinical tool.2 10

Another significant patient-identified barrier is hierarchy and power imbalance still prevalent in traditional approaches, where HCPs are the main decision-makers.8 Even when espousing SDM, HCPs often provide biased information in order to achieve a specific decisional outcome, for instance by only providing information about their preferred treatment option.7 This review found that HCPs often fail to explain all available options, withhold information and use jargon. In some instances, HCPs provide too much and too detailed information, also negatively impacting the decision-making process. Effective information exchange is an important step in the decision-making process55 and can either decrease or increase the power balance in the relationship.

This power imbalance is compounded by clinical information being held by HCPs who can influence the accuracy, clarity, tailoring and sharing of that information.7 13 53 This review identified accessible, adequate, accurate and balanced information as one of the most significant contributors to successful SDM and conversely, the lack of evidence and information as a barrier to SDM. Providing information that outlines options, risks and uncertainties can improve SDM7 8 and if presented in an accessible and culturally sensitive format, can help overcome language and socioeconomic barriers such as poor literacy.53

A complicating factor in SDM for CMC is, however, the lack of clinical and empirical evidence and information due to the unique illness trajectory of CMC, leading to high levels of uncertainty. The presence of uncertainty was the most striking barrier to SDM for CMC found in this review and sets CMC apart from many other patient populations. A high level of uncertainty is not a typical feature of SDM for children7 or adults53 but has been cited in areas such as neonatal intensive care,15 paediatric end-of-life care15 56 and dementia end-of-life care.55 The similarities with these clinical areas underscore the high-stress nature of decision-making for CMC.13 14

This review highlights the need for further research to increase the evidence base relating to diagnosis, prognosis and treatment options for CMC and to address the implementation of SDM for CMC, specifically focussing on families from diverse backgrounds who often experience less SDM.

Conclusion

This scoping review revealed that uncertainty about diagnosis, prognosis and treatment outcomes for CMC has a significant impact on SDM, in addition to barriers and facilitators identified in other paediatric and adult populations, highlighting the need to advance the clinical evidence base for this population. Furthermore, many factors impacting SDM fall within the organisational level where HCPs can influence change, including pursuing a power balance and equal partnership, improving continuity of care and improving information resources to meet the needs of parents of CMC, including those from diverse backgrounds. Focusing on these factors can potentially improve medical and developmental outcomes, quality of life of children and families and more effective use of healthcare resources. This review can be used to guide a research strategy in the field of SDM for CMC in community health services.