Community Paediatrics•

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

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.

What is already known on this topic

  • Shared decision-making is an evidence-based approach with known benefits to children with medical complexity, their families and the healthcare system, it is, however, poorly implemented.

What this study adds

  • This study highlights the impact of uncertainty of diagnosis, prognosis and treatment outcomes for children with medical complexity on shared decision-making. It highlights how healthcare providers can improve the implementation of shared decision-making by addressing the power imbalance in clinical encounters, improving continuity of care, improving communication and interpersonal skills, and making information more accessible to parents from diverse backgrounds.

How this study might affect research, practice or policy

  • This review can guide a research strategy in the field of shared decision-making for children with medical complexity in community health services support healthcare professionals to consider their influence on the decision-making process in everyday practice.

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

Protocol and registration

A scoping review protocol was registered on Open Science Framework on 19 May 2022.16

Eligibility criteria

Eligibility criteria are outlined in table 1. SDM included any process involving parents or caregivers in medical decision-making with HCPs10 and included family-centred practices. Sources reporting on multiple populations or settings were included if results were reported separately or if at least 50% of the results related to the eligible population or setting. Primary research using any methodology, secondary research including systematic reviews, literature, and scoping reviews and editorial or opinion pieces were included.

Table 1
|
Eligibility criteria

Information sources

The search included literature published from 1982 when SDM was first mentioned in scientific literature.9 Only articles published in English were included due to the time and cost of transcription. A three-step search strategy was followed.18 An initial search of Medline and CINAHL identified text words and index terms to develop a full search strategy (table 2). This search strategy was reviewed by a librarian using the Peer Review of Electronic Search Strategies 2015 guideline22 and was used to search databases including Medline, CINAHL, EMBASE, AMED, PsycINFO, PubMed, Cochrane Database of Systematic Reviews and sources of grey literature including Open Grey, NICE guidelines and CanChild website. The reference lists of included sources were screened for additional sources. The final search was completed on the 26 May 2022.

Table 2
|
Text words, index terms and subject heading identified for full search

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
Request permissionrequest permission icon
Figure 1

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

Data charting process

The JBI source of evidence template18 was modified for extraction of details about the author, publication year, country, participants, aim, context, study methods and findings relevant to the review questions. The first author completed data extraction and 10% were checked for consistency by second authors. Discrepancy in extraction were resolved through discussion. The extraction tool was iterative and was updated as the researchers became more familiar with the evidence.

Synthesis of results

Data were analysed by quantifying text, conducting basic qualitative content analysis and frequency counts.23 Barriers and facilitators were ordered according to themes and mapped onto the ecological model of health behaviour (EMHB).23 24 The EMHB emphasises the multiple layers of influence on healthcare behaviour and can guide the development of interventions by ensuring consideration of all factors impacting implementation.24 Four ecological levels were used (1) individual level including factors related to the child’s needs, (2) family level relating to knowledge, attitudes and skills of parents, (3) interpersonal level focused on interactions between HCPs and parents, and (4) organisational level considering institutional and HCP practices.

Patient and public involvement statement

No patients were involved in conducting this scoping review.

Results

Description of included sources

Thirty articles were included in this review, 18 were primary studies, 11 used qualitative4 25–34 (table 3), 5 quantitative3 35–38 and 2 mixed methods39 40 (table 4). Eight articles were theoretical or opinion pieces41–48 (table 5) and four literature reviews49–52 (table 6). Twelve of the primary studies included parent participants, one included HCPs and five included parents and HCPs. Seventeen sources originated in the USA, seven in Canada, four in the UK, two in the Netherlands and one in South Korea. Research interest in SDM for CMC is increasing with 23 articles published in the last 10 years of which 15 were published in the last 5 years.

Table 3
|
Description of sources—qualitative studies (ordered from earliest publication date)
Table 4
|
Description of sources—quantitative and mixed-methods studies (ordered from earliest publication date)
Table 5
|
Description of sources—reviews (ordered from earliest publication date)
Table 6
|
Description of sources—theoretical or opinion (ordered from earliest publication date)

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
Request permissionrequest permission icon
Figure 2

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

Implementation of SDM for CMC in community health services

Two qualitative26 34 and two quantitative3 36 studies reported on the implementation of SDM with CMC in community settings. The two qualitative studies were conducted 26 years apart (ethnographic study in 199526 and interview-based study in 202134), in both parents perceived a power imbalance between them and HCPs with decision-making situated with HCPs. Two quantitative studies analysed the same dataset from a national survey in the USA3 36 and found that although 85% of parents felt like partners with their child’s doctor, there was a negative association with minority ethnic and low socioeconomic status36 and children with greater complexity.3 This was attributed to multidisciplinary support needs, frequent hospital admissions, clinical uncertainty and social difficulties often experienced by parents of CMC.

Differences in SDM in different communities

Eight of the 18 primary studies reported on participant ethnicity but only three USA studies reported on differences in SDM among participants from a black, Hispanic and white background.35 36 38 These studies found that families from minority ethnic backgrounds, those with lower educational backgrounds and lower income levels experienced less coordinated care and less SDM.

Barriers and facilitators to SDM for CMC

Twenty-eight articles mentioned at least one barrier or facilitator to SDM. The most cited barriers related to clinical uncertainty of CMC, power imbalance between parents and HCPs and the lack of continuity of care (table 7).

Table 7
|
Barriers to SDM for CMC mapped to the ecological model

The most cited facilitators to SDM for CMC included sharing of accessible, adequate, accurate and balanced information about all treatment options including knowing about uncertainty. Several facilitators related to the way HCPs viewed and engaged parents as active team members, service accessibility and attributes relating to the family (table 8).

Table 8
|
Facilitators to SDM for CMC

Research recommendations

Nineteen articles concluded with research recommendations, most related to discovering how to involve families and develop collaborative relationships, particularly families from diverse backgrounds (table 9).

Table 9
|
Research recommendations

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.

Strengths and limitations

This review contributes to the limited evidence base concerning SDM for CMC and highlights themes around uncertainty, power imbalance and information sharing on implementation of SDM. The risk of missing sources due to the number of synonymous terms for SDM6 and CMC1 used in the literature was mitigated by developing a comprehensive list of search terms and conducting a systematic search using a range of databases. Results were strengthened by having second reviewers at all screening stages. Healthcare organisation and configuration vary across and within countries. It can range from mainly hospital-based services to services delivered in various hospital and community settings, services can be offered free at the point of contact or require payment by insurers or service users. This variation could have impacted the identification of and comparability of studies. Most sources originated in the USA and Canada where barriers might be different to the UK and other parts of the world. The studies that included minority ethnic groups were conducted in the USA and do not represent the UK population. The review only included sources published in English, which might have resulted in the exclusion of potentially valuable papers.

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.

Overview

Article metrics
Altmetricopen-url
Dimensionsopen-url