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Abstract
Objective This scoping review identifies evidence for design, models and evaluation of integrated care service provision for families and children in the first 2000 days, in the context of community-based specialised health, education and welfare services.
Design Scoping review following the Joanna Briggs scoping review method.
Data sources Medline, CINAHL, Cochrane and PsycINFO. Grey literature used a manual search of original articles, and snowball technique to identify government and policy documents relevant to Australia.
Eligibility criteria for selecting studies Inclusion criteria were ‘population’ of prebirth to age 5; ‘concept’ of design, models and delivery of integrated specialist care for children and families; and ‘context’ of community-based specialised health, education and welfare services. Medical Subject Heading (MeSH) and free text searches were conducted in electronic database sources. Limits January 2010 to October 2022, full text, English language, human.
Data extraction and synthesis Data were extracted independently by two authors using a piloted data extraction table and presented in table and narrative form.
Results Full text of 11 articles were reviewed, domains were coded using four domains of a framework identified in one reviewed article to maintain consistency of reporting; ‘governance,’ ‘leadership,’ ‘organisational culture and ethos,’ and ‘front-line interdisciplinary practice.’ A fifth domain was identified, ‘access.’
Conclusions Services providing integrated care for families in the early years will ideally be based on values generated through codesign with families and the community. Considerations include sound governance and leadership, shared vision, and commitment to providing accessible and culturally safe family-centred care.
- health policy
- public health
- community child health
Data availability statement
Data are stored in Open Science Framework and available on reasonable request.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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STRENGTHS AND LIMITATIONS OF THIS STUDY
To the authors’ knowledge, this is the first scoping review specific to the provision of integrated care for families and children in the first 2000 days.
This scoping review forms one part a larger study that is informed by an ongoing community consultation.
Consistent with the objective of scoping reviews, this review has synthesised evidence; the quality of studies or outcome measures were not assessed.
Introduction
An international health research priority on the first 2000 days of life (prebirth to age 5) stems from understanding that this period of development is critical to lifetime health, social and economic outcomes.1 2 At this age, there is profound pruning and shaping of brain pathways, setting the path for ongoing development.3 Early interventions help outcomes of health, behaviour and learning, and promote equity.1 In contrast, children of this age who are deprived from timely intervention are more likely to experience unfair developmental differences that continue over their life.2 3 There is a focus in the literature on the burden of risk for children in poor and middle-income countries, however, this burden extends to children and families in higher-income countries through inequitable access to care.2
Access to healthcare has been identified as a priority to reduce inequity in Australia and internationally.2 Within an ecological systems framework, social inequity impacts child development in high-income countries.4–6 This framework, originally proposed by Bronfenbrenner,7 focuses on each child as the centre of their environment surrounded by systems that influence development. Each system is nested inside another, for example, children are nested within layers of family, community, national and international policies, and historical systems that contribute to development and equity.4 7 Inequity is defined as ‘unfair or ethically problematic differences’ in developmental outcomes through factors including family income or adversity, and policy.8 These differences in outcomes are ‘systematic and preventable’ and relate to social determinants of health.9 For example, social and economic policy shapes how resources that support access to early intervention for children and families are distributed.10 The WHO10 makes three recommendations towards increasing health equity: (1) a social policy emphasis on early child development and protection for children and women; (2) governance that is dedicated to equity and (3) research evaluation to understand enablers and barriers for sustained action.10 Community-level factors important to equity include access to safe physical and social environments, access to early childhood services and sound governance.11
Each child has a right of equitable access to health and psychosocial care.12 Many children, however, face inequity because their families experience great difficulty in accessing specialist care for their child’s developmental needs.9 There is an international health policy focus on reducing inequity by increasing access to integrated, community-based health services for young children and their families.1 13 14 As reported in our scoping review protocol, a preliminary search found a persisting gap in research evidence for effective and sustainable integrated intervention for children and families in the early years.15 The overarching objective of this scoping review was to explore and identify evidence in the field of integrated care service provision for families and children in the first 2000 days.
Review question
‘What models, theoretical design and methods of formal evaluation are used for integrated specialist community-based health service provision for the first 2000 days?’.15
Subquestions:
What theoretical frameworks or logic models are used to guide understanding and evaluation of interventions?
What factors support or challenge the effective delivery of integrated specialist care for children and families prebirth to age 5?
Which outcomes are used to evaluate interventions?
Inclusion criteria
Inclusion criteria are ‘population’ of the first 2000 days prebirth to age 5; ‘concept’ of design, models and delivery of integrated specialist care for children and families; and ‘context’ of community-based specialised health, education and welfare services.15
Evidence sources were extracted through an electronic database search in three stages: (1) keyword searches using (A) MeSH terms and (B) free text searches restricted to title and abstract in Medline and CINAHL. (2) Database search using revised search terms in Medline, CINAHL, Cochrane, PsycINFO. Limits January 2010 to October 2022, full text, English language, human. International sources were included in data extraction. (3) Grey literature including manual search of original articles. A snowball technique used to identify grey literature included international sources, resulting in government and policy documents relevant to Australia.
Methods
Search strategy
The search strategy is reported in a scoping review protocol.15 Scopus database was unavailable at the time of the search (online supplemental file 1—search logbook). This scoping review follows the Joanna Briggs Institute Manual for Evidence Synthesis, including a Preferred Reporting Items for Systematic Reviews Meta-Analyses (PRISMA) flow chart.16
Supplemental material
Source of evidence screening and selection
Title and abstract were screened independently by HJN and BA; any disagreement was resolved by AM. Full text was reviewed independently by HJN and BA; where HJN and BA were unsure, the decision to include was made by consensus of AM and SB. All authors agreed on the final articles for inclusion. Reasons for exclusion of any article were documented. The search is documented using a PRISMA flow chart (figure 1). Search results were managed in EndNote V.X20 software and stored in Open Science Framework.
PRISMA flow chart. PRISMA, Preferred Reporting Items for Systematic Reviews Meta-Analyses. IMCI = Integrated Management of Childhood Illness
Data extraction
A data extraction table was piloted.15 Two authors (HJN and BA) independently extracted data using the template. In an iterative process, the two authors met at regular intervals to discuss the usefulness of the data extraction and the template was updated.
Analysis and presentation of results
Content analysis used a deductive method to analyse data and code text into an overarching framework that was identified during the scoping search.17 The four domains each represent characteristics of effective integrated service provision: ‘(1) governance, (2) leadership, (3) organisational culture and ethos and (4) ‘front-line’ interdisciplinary practice and team building’17 (p.41). Frequency counts of the number of articles relevant to each field were illustrated by one or two text examples. Fit of text examples into domains and subdomains were coded by HJN with expert review by BA, AM, SO and SB. Consistent with the scoping reviews, analysis was descriptive. Qualitative data were managed using NVivo V.12 software. Results were discussed in narrative form, with a focus on governance, policy and practice, and evaluation of integrated specialist healthcare in early childhood.10
The concept of ‘governance’ was guided by the a priori International Organization for Standardization (ISO) framework.18 The primary aim of governance is to guide the purpose of an organisation within ‘a meaningful reason to exist’ with ethical values, social integrity and to be sustainable over time.18
Patient and public involvement
This scoping review is part of a formative study for a non-government organisation in Western Australia, conducted in response to issues of access to services identified by community consultation.15
Search results
Inclusion and sources of evidence
In total, 345 references were identified, 330 in electronic database searches and 15 in the grey literature. On removal of duplicate records, 277 references remained. Of these, 11 articles were kept for review of full text; a reason for exclusion of the remaining articles is documented in figure 1. Eight of the articles described a research evaluation, while three were reviews.
Review findings
Findings are presented with an overview of common factors included in definitions of integrated care, followed by identified results for each sub question of the scoping review. These are: (1) the theoretical framework or logic model that guided understanding and evaluation of interventions; (2) the factors that supported or challenged effective delivery of integrated care for children prebirth to age 5 years and their families and (3) outcomes used to evaluate interventions. Sociodemographic data is defined in online supplemental appendix table 1.
Supplemental material
Integrated care was defined in 8 of 11 identified references (table 1). Most frequently, the definition included either a single point of care or accountability providing family support combined with early childhood healthcare and education.19–22 An alternative definition was a community of practice, with coordination of care for the family by one key worker.23 A common approach included shared philosophy with providers working together at management, programme implementation and service delivery levels, pooled funding and shared measurement of outcomes.17 24 25
Definition of integrated care
Question 1: what theoretical frameworks or logic models are used to guide understanding and evaluation of interventions?
Of the 11 identified references, 5 were guided by a theoretical framework, 4 used an ecological systems approach17 20–22 and 1 used ‘communities of practice theory’.23 The focus of this theory is on workplace culture of ‘collective learning towards a shared goal’,23 allowing specialists to share knowledge and coordinate care among different professions.
Only one of the identified references referred to the use of a programme logic model.20 In this report, the logic model reflected conceptual and actual work over many years to develop and refine a model of school-based integrated care for disadvantaged children and their families20 (table 2).
Use of a programme logic model
Question 2: what factors support or challenge the effective delivery of integrated specialist care for children and families prebirth to age 5?
Data were extracted relevant to ‘components that support or challenge the delivery of integrated care specific to the first 2000 days’15 (p.4) in the four domains of the a priori framework: governance, leadership, organisational culture and ethos, and front-line interdisciplinary practice.17 A fifth domain of ‘access’ was identified (online supplemental appendix table 2).
Supplemental material
Governance
Results are presented by the four subdomains of governance in the ISO model: value generation, strategy, oversight and accountability. Value generation: Integrated care is supported by clear governance structure with shared values and philosophy generated using active codesign with parents and community members for service planning, implementation, service delivery and evaluation.17 22 24 25 Strategy: The strategic value of a shared framework was discussed in two contexts. First, a framework for policy and service design, including support from different levels of government.22 24 A challenge to this is conflicting government priorities and shifts in policy direction.17 25 Second, a clearly articulated research framework should specify outcomes and how they will be achieved using mixed methods research approaches.22 25 Oversight: Sustainable service delivery is supported by interprofessional respect and challenged by shifting government priorities. It can be challenged by inequitable working conditions and unbalanced power relations among professional staff.17 24 25 Accountability: The overarching model of integrated support through a one-stop service comes at increased cost.17 Short-term funding can create insecurity in employment, worker stress and transitory staff with an associated loss of knowledge.17 25
Leadership
Three subdomains were identified in relation to leadership: accountability, recognition and strategies. Accountability is supported as leaders promote a team culture of reflective practice, professional development and a learning community.17 22 A challenge to accountability is managing the complex scale of an integrated service and responding quickly to identified needs, and tensions related to professional collaboration.25 Integrated service delivery is supported as leaders recognise and show value for the strengths and potential strengths of staff, trust staff, encourage autonomy and innovation, and celebrate success.17 20 Leadership strategies that support integrated services include encouragement of practitioners to share knowledge and respect the values and priorities of others, as well as being prepared to take risks and bend rules as they learn from the breadth of experience of other professionals.17
Organisational culture and ethos
Refers to the shared values, clear sense of purpose and patterns of behaviour of people who work in the organisation.17 Two subdomains were identified: cultural safety and shared vision. Cultural safety of care is supported by a strengths-based approach to care, and a willingness of staff to engage in ongoing enquiry and self-reflection as a basis for decision making.17 19–21 25 For Australian Aboriginal peoples, community consultation helped form a clear vision for the centre, including culturally safe facilities.19 21 In one setting, this included provision of holistic services and programmes, including an outdoor space with a fire pit for families to sit around while yarning or story telling.21 Holistic services included information and advocacy, help with accessing services and records, and capacity building. Programmes included early years education, playgroups, language and culture, domestic violence support and prevention, breakfast and nutrition programmes, and a library space.21 Staff capacity to work with families and communities with a shared vision is critical.20
Front-line interdisciplinary practice
Five subdomains were identified: community workers, coordination between programmes, key worker, staffing, and working with families. Community workers or peer support workers encouraged engagement of parents with the service, reduced stigma and increased the sense of connection to other parents with similar circumstances.22 25 26 Coordination between programmes supported a better use of available resources by addressing several risk areas rather than providing single interventions in silos.19 25 27 This requires a willingness of staff to embrace new roles and responsibilities, engage in professional learning, contribute with mutual respect and recognition of different expertise, priorities and common values.17 Successful coordination between programmes is supported by community trust and can be challenged by an increased workload for service coordinators17 A key worker is able to support parent engagement, providing a sense of security from building a long-term relationship with the same service provider.22 23 The single point of accountability can reduce the complexity faced by families in negotiating different priorities of professionals.20 Interdisciplinary care is supported by recruitment, induction and ongoing professional development of staff, supporting a shared ethos and strong working relationships.17 In working with families, a family-centred and trauma informed approach supports integrated care.17 22 25 27
Access
Two subdomains were identified: access and one-stop shop. Access is simplified for families when services and support are integrated across different sectors.21 22 Families may experience barriers to access related to transport, language or lack of trust due to a history of ongoing trauma and cultural history.17 19 A one-stop shop joins and connects programmes and services to support access to ‘programmes, services, training and employment opportunities in culturally relevant ways’.21 Access is supported by the provision of many single entry points, for example, soft entry through universal services that are inclusive of all people across the social gradient with targeted care for those who have greater needs.22 25 Other factors that support access are a culturally safe physical environment with green space on a public transport route or with transport assistance.21–23
Question 3: which outcomes are used to evaluate interventions?
Interventions were evaluated using action research, qualitative and quantitative methods. Drummond et al27 used action research cycles with qualitative analysis. Qualitative data were also obtained through case studies,23 thematic analysis of storytelling by Australian Aboriginal peoples21 and interviews with parents.26 28
Quantitative measures included: (1) education outcomes such as language and social skills, school readiness, attendance,19 Australian Early Development Census measures and academic performance20; (2) evaluations to assess family concerns and family linkage to health services,27 parent engagement22 using purposively developed measures; (3) cost-effectiveness and efficient use of resources17 24 and (4) pre–post quantitative analysis using validated measures administered by clinicians,28 health-related quality of life,27 and Ages and Stages Questionnaire26 (table 3).
Included outcome measures
Discussion
Eleven articles met the inclusion criteria of ‘population’ prebirth to age 5; ‘concept’ of design, models and delivery of integrated specialist care for children and families; and ‘context’ of community-based specialised health, education and welfare services. Findings are discussed by each of the three subquestions: (1) use of a theoretical framework and logic model to guide the intervention and evaluation; (2) supports or challenges to effective delivery of integrated care and (3) outcomes used to evaluate interventions.
Theoretical framework and logic model: A theoretical framework guides how new knowledge is processed; a logic model shows relationships between different parts of the implementation and research strategy. An ecological systems approach was the most frequently named theoretical framework in reviewed references.17 20–22 One article presented a programme logic model.20 Programme logic models give a visual representation of the theory behind anticipated change.29 To increase transparency, rigour and sustainability of new interventions, research implementation logic models are recommended.29 30 These include a description of the intervention, assumptions behind it, how it will be implemented, anticipated supports or challenges, outcomes and outcome indicators.29 30 Bronfenbrenner7 defined development as a lasting change in how children perceive and deal with their environment and over time contribute to the development of others. The most sound evidence base for child development will be informed by longitudinal research using an implementation logic model.31
Supports or challenges to effective delivery of integrated care: Five overarching domains were identified that support and challenge integrated care. Data were coded into four existing domains consistent with Press et al17; ‘governance,’ ‘leadership,’ ‘organisational culture and ethos,’ and ‘front-line interdisciplinary practice;’ and a fifth domain related to current literature, ‘access.’ The priority of streamlining access to children’s health services was similarly identified by Mörelius et al.32 Equitable access to early years systems of care is paramount to providing the best support for children and families, and to building communities of hope.31 We begin by looking at the importance of governance to effective delivery of care.
Governance
WHO10 recommend good governance as the foundation of successful action to promote health equity. Attributed to good governance was meaningful participation by community members who are most marginalised when setting priorities for policy, service delivery and evaluation. The inclusion of community members with other community stakeholders promotes ‘trust, reciprocity and social accountability’.10 Consistent with this emphasis, we identified shared vision as a main category that underlies strategy and supports delivery of integrated care. In the domain of governance, shared vision is achieved through creation of values and codesign of services in partnership with community members.22 24 25 Governance is also supported when leaders use a sound theoretical foundation to advocate for the shared vision, and to guide strategic planning and decision-making,17 demonstrating respect and value for ‘diverse professional contributions’.24 Consistent with the ecological systems framework, this governance support is ideally set in political leadership including policies that promote equity, and contributed to at all levels of governance.33 This must, however, be matched with active engagement with professionals, local community and families.33
A challenge of governance is inconsistent use of the word ‘integrated’ to describe colocation of services.20 22 24 Colocated multidisciplinary services do not necessarily collaborate to coordinate care.23 24 When run in parallel they can impede integration through overlap and lack of communication.21 Mawson contrasted colocation and integration in his description of a successful community-based initiative as a ‘fully integrated approach managed by one team of people’.31 Similarly, Ah Chee et al19 found that integration under a single provider enabled seamless referral of families to services that met their needs. Challenges to this include shifts in the direction of government structure, policy and funding, including an increased cost of providing truly integrated care.17 24 25 Sustained integrated service provision in the early years is supported by political vision and a funding commitment to addressing inequities in child health through early intervention.33 It is challenged by changing political priorities and short term funding rotations.31 34 Central to reducing the harm of intergenerational trauma and increasing health equity is funding at a level that allows staff time to listen and develop relationships with families.10
Leadership and organisational culture and ethos
At these levels, integration is supported by promoting shared understanding and accountability, and recognising the contribution made by each profession and each person. Shared understanding requires strong relationships, and leaders must be aware of the potential for these to be hindered by power imbalances among different professions.17 22 24 In contrast, staff who are secure in their professional identity benefit as their knowledge is increased through interprofessional working relationships, helping to sustain community trust and partnership.17 Integrated care is supported as leaders build a supportive culture of shared responsibility for families.25 Consistent with findings regarding governance, organisational culture and ethos is similarly supported by collective ownership of a shared vision, with ‘trust, openness and an expectation of being heard’.17
Front-line interdisciplinary practice
Front-line practice is supported as professionals work together, empowering families in a common goal of meeting the self-defined needs of the family.22 A key worker can help provide a stable base of support for the family, increasing the cost-effectiveness and sustainability of specialist care.20 23 For example, the key worker provides a structured interface between services and this supports sharing of information so that families do not have to keep retelling their story.23 Cultural safety is facilitated by trauma informed care22 and including respected community workers alongside specialist care.25 There is an increasing focus on the importance of cultural safety and trauma informed care in promoting equity for children and families.35 36 Cultural safety is promoted through reflective practice as healthcare providers seek to understand their own assumptions, power and bias, and measured through increase in health equity.36 In contrast, a focus on acquiring cultural knowledge can result in ‘othering’ of people who are seen as different, resulting in power imbalanced relationships.36 The harm of othering occurs as responsibility for problems is placed on people rather than the systems and structures that lead to inequity.37 Likewise, the aim of trauma informed care is to provide relationally secure care through understanding the impact of trauma on development, and integrating this knowledge into the entire culture of a workplace.38
Access
A one-stop model that is built from the ground up to be relevant to the community and culturally safe, with multiple soft entry points, supports equitable access, giving tiered support to families who are most in need. For example, through supported playgroups that target a particular need,22 or a welcoming library space.21 A challenge to access is related to families experience of feeling judged, unsafe or misunderstood.22 In high-income countries, there is a need to increase accessibility of services for families who are vulnerable through social circumstances including intergenerational poverty and trauma, and racism.2 33 Rather than being a result of personal decisions or ability, the vulnerability experienced by these families is frequently due to ecological systems of unequal power structures, from policies at government and organisational level to socially constructed attitudes that result in relational violence to others.33 For this reason, access is supported by respectful partnerships with families in care.21 22
3. Outcomes used to evaluate interventions: Outcomes were reported using qualitative and quantitative methods. In one intervention, a purposely designed tool, the ‘Family Services Inventory’, was used to guide measurement and reporting of total family linkages to health and social services.27 The ‘Core Care Conditions for Children and Families’ template39 was designed to evaluate how well child and family needs were met in centres dedicated to integrated care. This template defined conditions of optimal care but did not define measurement strategy. The authors recommended that interventions have a clear practice framework and programme logic model that names outcomes and evaluation strategy.22
Strengths and limitations
Consistent with the scoping review method, the purpose of this review was to map evidence, clarify definitions and key characteristics of integrated care provision for children and families in the first 2000 days, and overview how research has been conducted relevant to integrated care in the first 2000 days.16 40 It did not address the effectiveness of specific interventions as grades of effectiveness are typically reviewed during systematic reviews.16 40 Search criteria included an international focus, however, the snowball technique to identify grey literature resulted in 12 of 15 returns from Australia, and all that met inclusion criteria were from Australia.
Conclusions and recommendations
References identified in this scoping review supported design of integrated specialist care for families and children prebirth to age 5 provided in a one-stop service with soft entry to encourage access. The review identified and built on an existing model to provide evidence for service provision. ‘Governance’ includes values generated through a shared vision in codesign with families, guided by a sound theoretical framework, and with a structured approach to data sharing and outcome evaluation. ‘Leadership’ involves a participative approach, promoting trust and equal power relationships among different professions. ‘Organisational culture and ethos’ stresses the importance of cultural safety and shared vision. And ‘front-line interdisciplinary practice’ emphasises peer workers and professional staff committed to working together using trauma informed care and respect for the inherent dignity of each person, staff or family member. A fifth domain ‘access’ was identified with a focus on the provision of a service built from the ground up to be accessible to as many as possible. An ongoing requirement for structured research evaluation was consistently identified, preferably based on a sound logic model.
Data availability statement
Data are stored in Open Science Framework and available on reasonable request.
Ethics statements
Patient consent for publication
Ethics approval
This scoping review is one part of a three-part study to match integrated specialist service provision for the early years to community priorities. Ethics approval was obtained for a community consultation (Curtin University Human Research Ethics approval HRE2021-0546) and was not necessary for the scoping review.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Contributors HJN conceived of the study in conjunction with AM, SO and SB. HJN, BA, AM and SB independently performed screening. HJN and BA independently performed data extraction. HJN performed initial data analysis and BA, AM, SO and SB critically assessed data analysis. All authors read and approved the final manuscript. HJN is responsible for the overall content as guarantor.
Funding This work was funded by Carey Community Resources.
Competing interests This work is being conducted as part of a formative study for Carey Community Resources, a non-government organisation.
Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.