Emerging trends of integrated care for children and youth’s mental health in South-Eastern Norway - Horizon scanning on new models to be broaden out in the next 2-10 years

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MASTER THESIS

Emerging trends of integrated care for children and youth s mental health in South-Eastern Norway

Horizon scanning on new models to be broaden out in the next 2-10 years

Author: Supervisor:

Ida Charlotte Holmen Oddvar M. Kaarbøe

University of Oslo The Faculty of Medicine

Department of Health Management and Health Economics

Thesis submitted as a part of the Master of Philosophy Degree in Health Economics and Management (EU-HEM)

July, 2020

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Emerging trends of integrated care for children and youth s mental health in South-Eastern Norway - Horizon scanning on new models to be broaden out in the next 2-10 years

Ida Charlotte Holmen http://duo.uio.no/

Print: Reprosentralen, University of Oslo

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Abstract

Background: In response to system fragmentation and lack of coordination, different integrated care models (ICMs) are being developed to tackle the, in parallel, growing demand for healthcare services and to better tailor the services to the patients needs. New models have tended to focus on adults and there is an expressed need to develop models specifically for children and youth with mental health difficulties.

Objectives: i) Address issues and solutions to system fragmentation met by children and youth, ii) present early information on emerging models of integrated care and iii) identify the need, trends and perceived future obstacles of implementation of these ICMs in South-Eastern Norway (SEN).

Methods: This study has been conducted with a horizon scanning methodology. This has been done through grey literature review and semi-structured interviews. The grey literature review considers the political will and involvement in ICMs for children and youth in Norway and emerging national and international models of integration. The semi-structured interviews (following a modified Delphi method) elicit the views of 9 experts (decision makers, front line workers, specialists and user representative) working in SEN.

Results: Having a comprehensive child-centred approach towards integrated care services for children and youth with mental health difficulties is supported by the findings. Youth- friendly drop-in arenas, increased collaboration with child welfare, whole-system approaches, intersectoral teams, case management and services provision extending beyond 18 years of age are all indicated to be important features of the future design of ICMs for children and youth in SEN. Findings also indicate that unclarities in the division of responsibilities

between the involving sectors results in obstacles for implementation of ICMs, in addition to the introduction of new models is often too people-dependent and project-based financed.

Conclusion: The need for change has been stated and findings support the ongoing shift towards a more community-focused integrated care for children and youth through a

comprehensive child-centred approach. There is an urgency to look beyond standard practice and to find new and sustainable ways to coordinate services in order to meet the growing need for integrated care for children and youth with mental health difficulties.

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Acknowledgements

Writing my thesis in the midst of a pandemic has put its mark on the process and it has been intense both professionally and personally. I want to take this opportunity to give great thanks to a range of people supporting me through this time.

I would like to start by thanking my supervisor Oddvar M. Kaarbøe. Enormous thanks for all the support and involvement through the thesis process and for all the valuable feedback. I highly appreciate the time you have provided me with, the sharing of your knowledge and for your availability during this special time. Your professional guidance has been of immense value for navigating around the writing and development of the thesis.

Also, thank you for the involvement with NORCHER¹. It has been an exciting time of learning and I am humbled to have received the NORCHER-stipend in November 2019. I hope this thesis can be of value to the project and illuminate the problem statement regarding health care services for children and youth s mental health.

A big thank you goes to all my interviewees for taking their time to be a part of this project - and for showing flexibility and patient through this time of uncertainty. All conversations were inspiring and intriguing. I m honoured to have been given the opportunity to hear your opinions, experiences and professional knowledge on the issues at hand.

I like to give additional thanks to Terje P. Hagen for leading me on the path to this topic.

Also, a great thanks to my mentor Sina Waibel who has generously supported me through this process and shared her knowledge from the Department of Pediatrics at University of British Columbia. Kine and Anna - also a big thank you for your heart-warming support.

Last, but absolutely not least, an enormous thank you to my family and friends for their continuous support through this intense process and throughout my studies.

I cannot picture walking this walk without you.

Ida Charlotte Holmen, July 2020

1 The purpose of NORCHER is to develop, implement and evaluate models for health-service delivery that encourage equal access, high quality and cost effectiveness. The project is funded through the Research Council of Norway and led by The Department of Health management and Health Economics at Institute of Health and Society (UiO). The project is developed in close collaboration with South- Eastern Norway Regional Health Authority and the hospital in Vestfold. Retrieved from:

https://www.med.uio.no/helsam/forskning/prosjekter/NORCHER-helsetjenesteforskning/ (2020, February 26)

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List of tables

Table 1: Characteristics of the informants...24

Table 2: List of discussed models ..33

Table 3: Scoring of the models (after the second interview) . ...38 Table 4: Target group and degree of integration on the selected models .39 Table 5: Overview over the most important findings regarding the eight models of analysis..44 Table 6: Eight new models of integrated care for children and youth mental health 48 Table 7: Summary of addressed issues and connected solutions of the models ...51

List of figures

Figure 1: Four dimensions of integration for infants, children and young people ...13

Figure 2: Continuum of integration ..15

Figure 3: Overview over the models connections between target group and degree of

integration ..19

Figure 4: Modified Delphi process undertaken by author 27

Appendices

Appendix A: Interviewees familiarity with the innovations (after the first round of

interviews) ..65

Appendix B: All given scores . 66

Appendix C: Interview guide (first round of interviews) .67

Appendix D: Interview guide (second round of interviews) 70

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Abbreviations

BTI - Bedre Tverrfaglig Innsats (Better multidisciplinary efforts) BUP - Barne- og ungdomspsykiatrisk poliklinikk (Child and adolescent

psychiatric outpatient clinic)

FACT - Flexible Assertive Community Treatment GP - General Practitioner

HF - Helseforetak (Health Authority) ICM - Integrated Care Models

NAV - Arbeids- og velferdsetaten (The Norwegian Labour and Welfare Administration)

NHS - National Health Service (United Kingdom)

NORCHER - The Norwegian Centre for Health Service Research NSD - Norwegian Centre for Research Data

RCCI - Residential Child Care Institution

RHF/RHA - Regionale Helseforetak/ Regional Health Authority SEN - South-Eastern Norway

SERHA - South-Eastern Norway Regional Health Authority

SLT - Samordning av lokale rus og kriminalitetsforebyggende tiltak (Coordination of local drugs and crime preventative measures) WHO - World Health Organisation

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1 Introduction

The number of children and youth diagnosed with a mental illness is increasing in Norway (Folkehelseinstituttet, 2018; Helse Sør-Øst RHF, 2018). In addition, it is stated about half of all mental health problems start by the mid-teenage years, and three quarters by the mid- twenties making early developmental stages critical stages for mental health intervention (Naylor & Gilburt, 2016). In parallel with the increasing numbers of mental illness, system fragmentation and lack of coordination between actors who are detecting, treating and following up children and youth with mental health difficulties is pressing (Helse- og omsorgsdepartementet, 2019b).

The implementation of integrated care models (ICMs) is one way to tackle the problems of system fragmentation (Settipani et al., 2019) and to improve coordination and collaboration across sectors to guide the children and youth through the system. With the pressing urgency to find new ways to enact on the system fragmentations this target group is facing, this thesis aims to locate emerging ICMs tailored to the needs of the children and youth. How these ICMs addresses the key fragmentation problems of silo-thinking, interface obstacles, service gaps/overlaps, access barriers and discontinuity of care will be highlighted.

The thesis also takes into consideration that rarely does one model work across a country.

Especially in a country like Norway, where there is claimed to be a great variation in health care services between the locally governed municipalities (Helse- og omsorgsdepartementet, 2019b). By identifying emerging ICMs this study will provide decision makers and stakeholders with options on models they can implement and locally adapt in order to tackle the issue of increased demand of mental health integrated care services for children and youth with mental health difficulties.

The ambition of the study is to facilitate appropriate selection and implementation of new mental health ICMs for children and youth in the municipalities of South-Eastern Norway (SEN). In order to detect early signs of important emerging models, I have chosen a horizon scanning methodology based on a grey literature review and semi-structures interviews. By reviewing non-academic literature, reports and unpublished literature (i.e. grey literature), early

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2 signs of ongoing developments of ICMs and involvements on the issue at hand can be explored.

The interviews follow a modified Delphi-technique to locate a sense of agreement between experts on what new models they believe will reach actualisation and be broaden out in SEN.

The choice of methodology is based on the exploratory nature of conducting a horizon scan over novel interventions in connection to the persistent need to improve ICMs for children and youth. Further, the method also creates a framework to detect early sign of possible developments to implement in SEN, addressing the issues of system fragmentation.

In order to cover a broader scope of health and community services around children and youth, the choice of expert s interviewed contains a wide range of roles. The set of experts includes a mental health counsellor, municipal psychologist, general practitioner, leader (in both primary- and specialist sector), user representative, senior advisor, specialist in children- and youth psychiatry and health nurses. The listed decision makers interviewed play a vital role in the development and implementation of mental health ICMs, and their interviews provide a deeper understanding of the decisional processes related to the argumentation and choice of models.

User representatives, frontline workers and specialists interviewed are providing valuable insight to the impact of the models and how they actually play out in practice, being the wearer knowing where the shoe pinches.

To reach the mentioned ambitions of the study, the following research question is asked:

What new models of i eg a ed ca e f chi d e a d h e a hea h is out there and what models will emerge in South-Eastern Norway?

In order to answer the research question, the following objectives are developed:

- Address issues and solutions to system fragmentation met by children and youth - Present early information on emerging models of integrated care

- Identify the need, trends and perceived future obstacles of implementation of these ICMs in SEN

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3 Overview of the chapters:

In the following chapter, the Norwegian healthcare system and setting will be laid out and connected to national and international approaches to integrated care. Chapter 3 will then target the first objective by presenting the key issues of system fragmentation children and youth are facing, being i) silos, ii) service gaps and duplications, iii) interface obstacles, iv) access barriers and v) discontinuity of care. Then, chapter 4 will lay out a theoretical framework around different models and approaches to integrated care targeting the presented problems.

The approach to further answer the research question and the objectives will be presented in chapter 5 and the generated findings on the new models, trends, needs, and perceived obstacle of implementation will be laid out in chapter 6. By bridging the findings with the theories, an overview of the identified new models and how they are targeting the presented problems is developed in chapter 7. As a concluding chapter, chapter 8 will then link and further interpret the main concepts of the previous chapters in order to clearly answer the research question.

Lastly, chapter 9 will identify the limitations of the study and provide recommendation for further studies.

The ultimate objective of this study is to help bridging the gap between what is out there and what is coming through theory and shared knowledge and with that give options and support to decision makers on what they can do to improve the field of integrated mental health services for children and youth in SEN.

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2 The institutional setting

This chapter will explain the Norwegian healthcare system and approaches to integrated care, being the target country for this paper. In extension to the national scope, Amelung et al.

(2017b) out forward that international literature has documented successful innovations and approaches which might provide valuable lessons on the design and implementation of new models of integrated care in Norway. For example, there has been documented initiatives in Australia and the United Kingdom (UK) towards youth mental health services (Settipani et al., 2019; Wolfe, 2017). Hence, this chapter will include a brief description of responses to integrated care in the respective countries.

2.1 The Norwegian context

According to Norway s Country Health Profile, Norway are spending more on health per capita than any other EU country (OECD & European Observatory on Health Systems and Policies, 2019). In combination with the increase of mental illness in the younger generation and the aging population, the Norwegian health budgets is expected to experience elevated pressure.

These forecasts are not sustainable and will be requiring strategies to improve efficiency and strengthencommunity care (OECD & European Observatory on Health Systems and Policies, 2019).

In addition to a system under pressure, meeting the needs of children and youth with mental health illness is a challenge in the current system. In fact, over 60 percent of the Norwegian municipalities report that mental health difficulties among children and youth is their greatest challenges in public health- and preventative work (Helse- og omsorgsdepartementet, 2019b).

The Norwegian government highlights explicitly that mental health integrated care services are an important step in developing a strategy to improve the allocation of responsibility in the municipal- and specialist health care sector (Helse- og omsorgsdepartementet, 2019b) in a more health promoting and sustainable way.

The following section will further explain how the construction of the Norwegian healthcare system plays a vital role in shaping the need for coordination, and what strategies and approached enacted on to improve that coordination for children and youth s health services.

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2.1.1 The Norwegian healthcare system

This section will provide a more general overview of the main concepts of the Norwegian healthcare system in order to familiarise the reader with the context of which the ICMs will be operating. Wherefore, it is more wide-ranging in nature than the following chapters on system fragmentation and integrated care.

To set the stage of the system, organisational power and general structures are briefly laid out.

Starting with the facts that the Norwegian health system i) is semi-decentralised, ii) has a strong universal primary care focus, and iii) is based on the classical Scandinavian Welfare model, which combines tax-based financing, universal health coverage, and provision of universally accessible services mainly within the public sector (OECD & European Observatory on Health Systems and Policies, 2019; Romøren, Torjesen, & Landmark, 2011; Wolfe, 2017).

Further, the general structure of the care delivery is divided due to the two-tiers of the healthcare system: municipal- and specialist-care. In this organisational structure, the central government is responsible for specialist care and municipalities for primary- and community care (OECD & European Observatory on Health Systems and Policies, 2019). Also, the four regional health authorities (RHAs) owns the hospital trusts, and the RHAs is again owned by the central government (OECD & European Observatory on Health Systems and Policies, 2019).

Following this structure is a system with different administrable levels. The municipalities being the lowest level of public administration (Romøren, Torjesen, & Landmark, 2011), with strong local government, and are playing an important role in coordinating care (OECD &

European Observatory on Health Systems and Policies, 2019; Romøren et al., 2011).

Henceforth also an increasing role in coordinating integrated care for children and youth.

Lastly, the intermediate role between the two-tiers of care and administerial levels are the important role of the general practitioners (GPs). The GPs are part of the public system through contracts with the municipalities and act as gatekeepers to specialist care (OECD & European Observatory on Health Systems and Policies, 2019). Therefore, obtaining ready communication and coordination between the GPs, the two-tiers of health care and the

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6 administerial levels are important in meeting the health care needs of the population, especially for children and youth. Hence, several approaches of integrated care have been enacted on.

2.1.2 Approaches to integrated care

Obtaining continuity of care and consistent information flow between sectors have historically been challenging in Norway because of the mentioned division of administerial levels and semi-decentralisation (OECD & European Observatory on Health Systems and Policies, 2019).

The different aims of the two tiers also entails a need for different approaches and tools for coordination, as the specialist sector having the central aim of diagnostics and treatment while primary sector has a greater focus on functioning and coping (Helse- og omsorgsdepartementet, 2009; Romøren, Torjesen, & Landmark, 2011).

In response to the coordinating problems of the two-tier system, Norway have enacted on different approaches with the aim of improving care coordination between the two tiers of care (OECD & European Observatory on Health Systems and Policies, 2019; Romøren, Torjesen,

& Landmark, 2011; Wolfe, 2017). Over the years, several local initiatives, projects and reforms have been acted on aiming to improve that coordination (Romøren et al., 2011). One main reform is the Samhandlingsreformen (2008-2009) or The Coordination Reform . The reform was implemented in 2012, and the main goal of the reform was for patients to receive the proper treatment at the right place and right time (Helse- og omsorgsdepartementet, 2009).

Through the reform, agreements of coordination were mandated, and new financial incentives introduced.

Despite the many approaches and reforms towards more coordinated care, the issues of system fragmentation still remain. Correspondingly with several other countries are, for example, the Norwegian mental health care services for children having similar problems regarding fragmented and complex services not being able to deliver sufficient coordinated care (Wolfe, 2017) between and within both the two-tiers of healthcare and other sectors involving children and youth.

2.2 International approaches to integrated care

Since other countries also are experiencing similar problems regarding system fragmentation for children and youth services, valuable lessons can be learned through a global lens. While

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7 questions remain about the transferability of directly implement international models of integrated care - Amelung et al. (2017b) found growing international evidence on essential elements, tools and interventions to facilitate the successful implementation of integrated care.

These approaches can serve as inspiration and lessons learn to the Norwegian setting regarding development of new ICMs.

Australia is one country to look for inspiration. The Making Mental Health Count report (OECD, 2014) highlights how Australia has continuously been shifting away from hospital care towards community-based mental health services. In addition, their innovative approach and new comprehensive models of integrated care especially for children and youth has gained attention (Settipani, et al., 2019; Wolfe, 2017). Even though the level of public administration between Australia and Norway does, to some extent, differ and can hence play a role in terms of the different system s flexibility to innovation There can be of value to look towards the innovations enacted on to see how things can be done differently and inspire to look beyond standard practise.

Another example of a country addressing the same concerns and challenges with system fragmentation is UK (Leutz, 1999). As Norway s long-standing challenge regarding

coordination between the solid administerial levels, UK has also a long history with a health- and community sector traditionally characterised by organisational division (Leutz, 1999).

However, there are also long-standing effort in the UK to bridge these divisions (Leutz, 1999) through, for example, the development and implementation of a range of integrated health care models and networks (Wolfe, 2017). Through this effort of coordination between strong organisational division of healthcare in the UK, Norway can collect some lessons learned to bring back to the more or less familiar strong division between the two-tiers of healthcare.

The reason why these two countries are chosen to be highlighted in this thesis is because they can serve inspiration to the Norwegian system in terms of their systematic responses to challenges for children and youth with mental health difficulties (Malla, et al., 2018).

The next chapter will expand on the key problems of fragmentation those children and youth are facing. The addressed key problems will reflect points in the system in need of systematic responses in terms of increased integration, improved coordination and enhanced

communication between its parts and as a whole.

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3 System fragmentation key problems

«Divisions of labor are necessary the boundaries are inevitable but the disconnections are destructive»

(Glouberman & Mintzberg, 2001, p.64).

Before laying out the issues of system fragmentation, as hinted in the quote by Glouberman and Mintzberg, system differentiation might not always be problematic - it is in many cases even a necessity. However, problems do occur when the system differentiation is met by a lack of integration (Glouberman & Mintzberg, 2001) resulting in a system composed by fragmented parts. From this fragmented system, issues related to silo-thinking, gaps/overlaps of services, interface obstacles, access barriers and discontinuity of care occur. This chapter will lay out these key problems that children and youth with mental health difficulties are facing when systems are fragmentated and fail to coordinate.

3.1 Silos

The system around children, youth and their families consist of a variety of support services, such as early childhood education, family support and health care (Johnson, Chung, Schroeder,

& Meyers, 2012), of which have a tendency to operate in silos. Briefly going back to the point of differentiation, having these siloes does serve an important purpose of clearly define the different roles and allocating responsibilities between and within sectors (Nooteboom, Mulder, Kuiper, Colins, & Vermeiren, 2020). However, Johnson et al. (2012) points out that despite that these siloes can, in theory, be integrated and produce a coordinated system addressing the needs of children - In practice, they are rather driven by i) disconnected funding streams, ii) misaligned resources, iii) different level of administration and iv) lack of systemic coordination. Johnson et al. (2012) further make the point that children do not live in silos, but across and between them (Johnson et al., 2012, p.84). This statement reflects the importance of obtaining sufficient coordination between the silos in order to see the whole child. If not coordinated sufficiently, the silos might leave the child and family with barriers to access services and gaps/duplication of services (Johnson et al., 2012).

The concept of silo-thinking can also be drawn specifically to the divide of mental and physical health services. Naylor (2017) makes the case that despite the great correlations between mental

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9 and physical health, structural and cultural divisions between the two seems to be reinforced by the organisational nature of healthcare systems, the funding streams and through the structure of professionals education and training. The resulting isolated silos between mental and physical health services (Brook & Vaiana, 2015) are putting systems in opposition to what WHO claim to be a globally accepted principle that there is no health without mental health (World Health Organization, 2013, p.6). Further, this division of physical and mental health care can greatly impact patient outcomes (Naylor, 2017) for children and youth trying to navigate between all these silos not coordinating and communicating sufficiently with each other.

3.2 Interface obstacles

Along the borders of the mentioned siloes interface obstacles do occur, hence constructing sensitive and crucial points for coordination and regulation in terms of, for example, communication and also mutual understanding and clear division of responsibilities (Nooteboom, Mulder, Kuiper, Colins, & Vermeiren, 2020). Especially where there is competing interests and aims.

Communicating the responsibilities between the silos can be problematic. A Nuffield Trust briefing (2016) displays that to meet the communication issue, there is a need to find ways to improve sharing of information, knowledge, expertise and care (Kossarova, Devakumar, &

Edwards, 2016). This gap of communication can lead to situations of misunderstanding. This misunderstanding can be further explained by certain characteristics of the healthcare sector with its embedded information asymmetry and different values regarding services prioritisation and distribution (Rehnberg & Häkkinen, 2013). These characteristics can again be expressed through different behavioural patterns depended on which interface to target for integration.

Amelung, Himmler and Stein (2017a) find that differentiation can explain some behavioural patterns and the generated need for regulation. However, despite a clear need for regulation, they further make the point even though a healthcare system shows to be highly regulated, behavioural patterns and competitions still remains. Therefore, finding ways to create a sense of mutual understanding and to establish fair compromises between competing interests is important to create a more coordinated and communicative care system (Amelung et al., 2017a).

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3.3 Service gaps and duplications

Another key problem of system fragmentation and insufficient communication is the simultaneous duplication of care and gaps in care (Goodwin, Stein, & Amelung, 2017). These problems can be connected to systems being inconsistent in communication and linking of services, resulting in variable quality of care for the children and youth and additional costs to the system (Walsh, 2016).

3.4 Access barriers

For services to serve their purposes, they have to be accessible to the children and youth.

Tylee, Haller, Graham, Churchill and Sanci (2007) present how barriers to access health services, and especially mental health services, can play out differently depending on social determinants of health and a person s unique stage of biological, cognitive and/or

psychosocial transitions through childhood, adolescence and all into adulthood. Tylee et al.

(2007) further make the case that children and youth s help-seeking behaviour for mental health and connected stigma can make young people unwilling or unable to obtain needed health services. In this case, the characterises of the children and youth affect the accessibility of the services.

The characteristics of the services itself can also plays a vital part in accessibility of services to children and youth. In this case, the services can be inaccessible for reason related to i) lack of convenience (e.g. long distances, nonstrategic location in relation to children/youth s arenas or inconvenient opening hours), ii) lack of publicity and visibility (e.g. the youth might not know of the available services) or iii) costs (Tylee, Haller, Graham, Churchill, &

Sanci, 2007).

In addition to the barriers to access connected to characterises of the children or youth and the services, the actual capacity accessible also has to be considered. Kossarova, Devakumar and Edwards (2016) have found that together with the increased need of access to services, the capacity issues in primary care adds to an elevated need for specialised expertise in the community. The findings of Kossarova et al. (2016) further indicate that the rigid gatekeeping role of the GPs results in missed opportunities for early intervention and produces problems downstream in the health service, as well as having negative outcomes for children and youth.

Therefore, Kossarova et al. (2016) conclude that an overall balance in access, knowledge and

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11 skills between care in the community and the specialist sector is essential for integrated services for children and youth.

3.5 Discontinuity of care

Nguyen et al. (2017) found that there are inconsistencies in service delivery and practice standards creating in inconsistent flow of communication and services, especially in maintaining continuity of care as youth transition from child and adolescent mental health services to adult mental health services. Supporting this finding, research have identified difficulties for children and youth in obtaining access to care and providing coordinated and integrated services for youth in this transitional stage in life (Nguyen et al., 2017). This inconsistency and discontinuity of care results in children and youth falling between the two stools of child/adolescence service provision and adult service provision (Nguyen et al., 2017).

To sum up this chapter, some key issues of the experienced and researched fragmentation are the elements of silos, service gaps/overlaps, interface obstacles, lack of access and discontinuity of care. Connected to these problems are also the need of regulation, communication, capacity building, early intervention and targeting broader determinants of health. The next chapter will further explore how different forms of ICMs address these key problems of system fragmentation for children and youth with mental health difficulties.

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4 Theoretical Framework

In response to the described key problems of system fragmentation, different integrated care models (ICMs) are being developed to tackle the, in parallel, growing demand for healthcare services (Naylor & Gilburt, 2016) and to better tailor the services to the patients needs (Wissow, Brown, Hilt, & Sarvet, 2017).

New models of integrated care have, however, tended to focus on adults (Kossarova, Devakumar, & Edwards, 2016) and there is a great need to know more about ICMs specifically for children and youth2 with mental health difficulties3 (Helse- og omsorgsdepartementet, 2019b). Therefore, this thesis will undertake a comprehensive child-centred approach to integrated care, focusing on how different models can solve the issues of system fragmentations and erode hinders this target group is experiencing when in need of more coordinated services.

4.2 Integrated Care

From the problem description of system fragmentation, we have learned that users of health services are experiencing problems with silos, interface obstacles, gaps/overlapping of services, access barriers and discontinuity of care. Researchers (Nooteboom, Mulder, Kuiper, Colins, & Vermeiren, 2020; Walshe, 2016; Wolfe, Lemer, & Cass, 2016) have argued that these problems might be solved if health and care services are being organised, finances and managed in a more integrated and holistic way. These health care delivery models are being categorized as Integrated Care Models (World Health Organization, 2016). Integrated care as a topic continues to gain support and interest in the field of healthcare management and health systems design to overcome the mentioned issues of fragmentation (Amelung, et al., 2017b;

Naylor & Gilburt, 2016; World Health Organization, 2016).

Amelung et al. (2017b) highlights that at the core of ICMs is the provision of the right care, at the right time by the appropriate service provider in a timely manner, irrespective of organizational boundaries or financial flows (Amelung et al., 2017b, p.v). In order to support

2 In order to grasp all age spectres used in the discussed models, this paper will define children and youth as children and youth between 0 and 26 years of age.

3 With mental health difficulties , this paper aims at not only looking at mental disorders (diagnoses like anxiety, depression, eating disorder etc. as stated in, for example, the ICD-10), but to include all types of mental health challenges. This is to include a preventative element and obtain a whole system approach.

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13 the complexity of that core concept of ICMs and adding in the complexity of service provision for children and youth s mental health, a comprehensive approach to integration is needed.

4.2.1 Comprehensive integration

According to Wolfe (2017), comprehensive integrated care models for children and youth can improve the system of today and enhance care by solving problems of insufficient distribution of access and expertise in municipal care in addition to creating more efficient coordination between the many interfaces of a child and the connected developmental aspects (Wolfe, 2017).

Wolfe (2017) further claims that conducting comprehensive integration improve the allocation of resources in a more sustainable way.

4.2.1.1 Four dimensions of integration

Wolfe, Lemer and Cass (2016) introduce four dimensions of integration involved in their comprehensive approach to integration. Figure 1 below present the four being i) vertical, ii) horizontal, iii) longitudinal and iv) population integration.

Figure 1: Four dimensions of integration for infants, children and young people (Wolfe et al., 2016)

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14 Vertical dimension takes place between tiers of healthcare, for example by having a child health team with workers from both primary and specialist sector working around the need of the child (Wolfe, 2017). Horizontal dimension is between health care, school, family, social services and beyond, targeting broader determinants of health (Kossarova, Devakumar, &

Edwards, 2016; Wolfe, Lemer, & Cass, 2016; Wolfe, 2017). Longitudinal dimension is about integrating care across the life course, counting for the developmental aspects of the child or youth (Wolfe et a., 2016; Wolfe, 2017). Lastly, the population dimension is between health, public health and wider policy, leading to a wider integration of which includes the vertical, horizontal and longitudinal dimension (Wolfe, 2017).

The choise of dimension(s) for a model to develop differst depending on the i) target group, ii) degree of integration, iii) available resoruces, iv) administral level and v) the overall aim of the model. Taking the element of target groups first, a model can vary in levels of focus ranging from i) individual/disease specific to ii) group of patients/populations (e.g. age) and to iii) wider populations (Walsh, 2016). In an individual and disease specific model the aim is to integrate and link services, provide needed and continous support and improve communication around that individual moving between a range of health services (Kossarova, Devakumar, &

Edwards, 2016). In this case, integrating in the vertical dimension can be favoured in order to provide contintuity of care tailored after the child or youth s needs across sectors and to avoid gaps of services. With a wider scope of focus, more people will be included in the model and the allocation of resoruces have do be different than from the individualised model in order to create a sustainable model. In this case, a more collaborate model in a horizontal dimension can be a way to cooperate with a wider range of services and arenaes where the children and youth are moving between hence, improve the chances for early intervention (Kossarova et al., 2016). Despite the range of focus, having a comprehensive approach to integration of serices for children and youth does focus on more than just health care in order to see the whole child.

4.2.1.2 Degrees of integration

The degree of integration is another defining concept regarding the choice of dimension of integration between units. According to Wolfe, Lemer and Cass (2016), care through the four dimensions can be delivered through virtual or physical colocation of services. The former is virtual linkages supporting the integration and communication between unit through the formation of alliance, networks and contractual agreements (e.g. standardized referral

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15 procedures), and the latter is often descried as mergers or physical colocation of assets and infrastructures (e.g. having one-door-in to a range units through one collocated unit) (World Health Organization, 2016; Walsh, 2016). Expanding on this, is the concept of degrees of integration, which Ahgren and Axelsson (2005) explicitly identifies to be a continuum ranging from full segregation to full integration (see figure 2).

Figure 2: Continuum of integration (Ahgren & Axelsson, 2005)

Full segregation is the opposite of full integration and is added to the continuum with the purpose of being a zero-point (Ahgren & Axelsson, 2005).

Linkage (virtual colocation) is a means of commination between units with the aim of conducting adequate referral of patients to the right unit at the right time and provide good communication between the professionals involved in the services of the child (Ahgren &

Axelsson, 2005). Clinical guidelines and protocols describing who is responsible for what are examples of mechanisms positively affecting the child or youth in this form of integration (Ahgren & Axelsson, 2005). By creating a linkage and clarify the responsibilities around the services, continuity of care is promoted and the coordination around the child or youth is elevated (Kossarova, Devakumar, & Edwards, 2016).

Coordination in networks has an elevated degree of structure than linkage (Ahgren & Axelsson, 2005). Through coordinating mechanisms and sharing of clinical information, this form of integration aims to further enhance continuity of care between different units (Ahgren &

Axelsson, 2005). Care pathways is an example of this degree of integrated model by linking services in chains of care between organisational units that are still largely operating separately from each other (Ahgren & Axelsson, 2005). The more coordinated linkage on this level of integration creates a greater flow of services and communication round the user than of the more virtual linkage.

Full segregation

Full integration Linkage

Co-ordination

in networks Co-operation

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16 Cooperation is a higher level of coordination with having an appointed network manager (Ahgren & Axelsson, 2005). One example on type of network manager is a case manager. This model is an individualised ICM appointing one manager to have the complete overview over the child or youth s health and social needs (and the needs of the family) in addition to what appropriate health and support services are available to the individual in meeting those needs (Amelung et al., 2017b; Nooteboom, Mulder, Kuiper, Colins, & Vermeiren, 2020). As the case manager embodies the mechanisms to cooperate and coordinate between professionals and other support services, this is a form of integration aiming to improve the relationships and contacts between the organisational units involved (Ahgren & Axelsson, 2005; Amelung et al., 2017b). As a result, the child or youth will receive a closer follow-up through a whole-child approach (Wolfe, 2017).

Full integration (physical colocation) is the highest form of integration were resources are pooled together and emerged into one physical colocation (Ahgren & Axelsson, 2005).

Different organisational units do then operate through one new organisation with one door to enter (Ahgren & Axelsson, 2005). This one-door-in approach can help children and youth and their families in finding the right help by simplifying the entry point to the services. Ahgren and Axelsson (2005) highlight that a challenge with form of integration is to define the target group and combine the right and necessary services in the unit with a sustainable resource allocation.

Where on the continuum of integration to allocate a model is not always straight forward. The consequence of being a continuum is that models can be placed along it and include elements of the different definitions in one model dependent of factors like availability of resources and aims (Wolfe, 2017). For example, one organisation reaching full integration through physical colocation can also have a care manager on site coordinating between the organisation and other outside units. In other words, integrated care is complex with a range of target groups, degrees of integration and dimensions of integration and depends on factors like the different needs of communication, administrational level and aim of the variety of organisational units (Wolfe, 2017).

4.2.2 Integrated care models

This section will further elaborate on this complexity of the comprehensive approach to integrated care presented, by presenting a wide range of applicable approaches and models

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17 (Goodwin, Stein, & Amelung, 2017; World Health Organization, 2016) across the four dimensions of integration for children and youth mental health.

4.2.2.1 Models in a vertical dimension Intersectoral teams and care pathways

The dimension of vertical integration has been defined by Wolfe, Lemer and Cass (2016) as linking primary and secondary care into a unified team that overcomes unhelpful divisions between physical and mental health and achieves a balance between access and expertise that best suits children and young people (Wolfe, Lemer, & Cass, 2016, p. 993). This definition holds solid ground to the team-based approach of integration models and aims at solving the issue of existing gaps and duplications of services.

In addition to Wolfe, Lemer and Cass s (2016) team-based approach to vertical integration, the mentioned individualised care pathways, or chains of care , has typically been categorised within vertical integration (Goodwin, 2016; World Health Organization, 2016). In Goodwin s (2016) definition of vertical integration, care pathways is a form of integrated care also demonstrated through protocols based on individuals with a specific diseases and/or care transitions between specialist and primary care providers. In other words, care pathways can be understood as more of a disease-specific integrated care model than the team-based approach to Wolfe et al. (2016).

In theory, Wolfe, Lemer and Cass s (2016) team-based approach to this dimension is more consistent with the wider whole system approach of prevention and care than Goodwin s (2016) form being more best practise -driven. Despite their differences and aims, both forms of vertical integration intent to serve the purpose of integrating and linking services, avoiding gaps and overlapping of services and in providing a more patient focused care (Goodwin, 2016;

Wolfe et al., 2016) around the child or youth.

4.2.2.2. Models in a horizontal dimension - Collaborative models

Children and youth s broader determinants of health are targeted in the horizontal dimension (Kossarova, Devakumar, & Edwards, 2016), aiming to see the whole child by linking and coordinating health, education and social care (Wolfe, Lemer, & Cass, 2016). The specific target group of the model decides on the degree of integration to include in a collaborative model. For example, the mentioned individualised care manager works in the horizontal dimension of integration across the sectors involving the child or youth. Turning to a broader

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18 focus in terms of target group, the collaborative model has to allocate the resources differently to be sustainable and can integrate in a higher degree with a more general scope. By creating a more collaborative model around the child or youth with including social services, family, school and beyond, there is an elevated opportunity for early intervention (Kossarova, et al., 2016; Wolfe, 2017) and is a clear step towards a more comprehensive approach to integrated care for children and youth.

4.2.2.3 Models in a longitudinal dimension - 18+

The third dimension, longitudinal integration, is about linking services across the life course stages (Wolfe, Lemer, & Cass, 2016). By creating a smoother transition through the different developmental stages, the issue of discontinuity of care can be tackled and a greater flow can unfold (Nguyen et al., 2017).

For children and youth, the transitional stages between child services to adolescence services to adult services are critical points in terms of continuity of care and to avoid falling between the stools of the stages (Nguyen et al., 2017). Specifically, the age of 18 is a crucial point for youth, because by this age, the changes in jurisdiction and defining nature of now being classified as adult can affect access and coordination of care. Hence, for children and youth, having a model considering these transitions will support their developmental transits and avoid for them to fall between the gaps of services with the risk of then not meet their health and social care needs (Singh et al., 2010).

4.2.2.4 Models in a population dimension Whole-system models

The objectives of early intervention and broader determinants of health in the horizontal dimension can also be reached through the fourth dimension - the population dimension (Kossarova, Devakumar, & Edwards, 2016). A population-based model does, however, also link healthcare with public health through both vertical, horizontal and longitudinal integration in other words, population integration entails an even greater holistic model (Wolfe, Lemer,

& Cass, 2016). This approach, being a whole-system model, is directed towards both promotion, prevention, professional care and self-care (World Health Organization, 2016) and is a clear step towards a total comprehensive approach to child health systems strengthening (Wolfe, 2017).

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19 Having a whole-system model will focus on the whole population and not only children and youth. In this dimension, the broader context will be targeted and a whole-system model can, for example, affect a child or youth by i) including an intersectoral team around the treatment of a child or youth, ii) establish collaborations around youth-friendly arenas for easy access and early intervention, iii) arching over the transitional age of 18 for continuity of care, in addition to iv) promoting self-help and mastering through courses and different activities, which again can include housing and economy (Wolfe, Lemer, & Cass, 2016). These examples are targeted towards children and youth for the scope of the thesis. However, the population dimension also includes the whole population through family/adults services. Strengthening the whole population serves a great purpose of strengthening the environment around the children and youth, and hence target the broader determinants of health (Kossarova, Devakumar, & Edwards, 2016).

In order to illustrate an overview over the discussed models, figure 3 will sum up the mentioned spectrum of target groups and degree of integration in connection with the described models in the four dimensions of integration. Again, because of the complex nature of ICMs, models might move on the continuums and the categorisation in figure 3 is based on the presented theoretical framework of this thesis.

Figure 3: Overview over the models connections between target group and degree of integration

Source: Author s own representation Individual

(General or specific diagnosis)

Group Population

Full segregation Linkage (virtual colocation)

Coordination

in networks Cooperation

Full integration (physical colocation)

Care pathways/intersectoral teams Case management Collaborative models Whole-system Target groupDegreeModel

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20 Wolfe, Lemer and Cass (2016) explain that translating the ambitious of the comprehensive model of integration into practice can be a challenge. Especially when it comes to making the investment towards the change in an already pressing field of health care (Wolfe et al., 2016).

They further discuss how having an evidence-base play an important role both in the argumentation towards making an investment and, more importantly, in making the right investment (Wolfe, Lemer, & Cass, 2016). One way to meet this need of evidence is to embed a space in the model to test new services, continuously evaluate the model itself and/or conduct targeted health care service research for children and youth as part of routine practice (Naylor

& Gilburt, 2016; Wolfe et al., 2016).

The next chapter demonstrates how I approach the quest of finding emerging ICMs for children and youth s mental health and identifying the ones to be seen in SEN.

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21

5 Research methods

This study has been conducted with a horizon scanning methodology. The choice of methodology targets the research question through the exploratory approach of locating novel interventions and persistent problems/trends of mental health services for children and youth (OECD, n.d.). Consequently, detect early signs of potentially important developments of ICMs will provide lead time to decision makers in SEN to develop strategies towards the implementation of the emerging ICMs addressing the unmet needs of system fragmentation (DeLurio et al., 2015; OECD, n.d.). The horizon scanning has been done through a grey literature review and semi-structured expert interviews.

The grey literature review includes the mapping of relevant innovative models, both in a national and international scope. It also explores the political will, involvement and need of integrated healthcare services for children and youth with mental health difficulties in Norway.

The semi-structured expert interviews elicit the views of key informants within the geographical area of SEN. This choice of area is based on known innovations in Vestfold (Forprosjektgruppen-Samhandlingsutvalget i Vestfold, 2020), South-Eastern Norway Regional Health Authority (SERHA)´s involvement with The Norwegian Centre for Health Service Research (NORCHER) and SENs strategic and political location to carry out the interviews.

The interviews follow Sutherland et al. (2017) s example on modified Delphi technique in order to reach a sense of consensus between the experts on new models and to share organisational observations.

Kossarova, Devakumar and Edwards (2016) highlights the need of sharing information and knowledge between sectors and actors in order to enter each other s silos and increase understanding. By sharing multidisciplinary knowledge and experiences on how different models are constructed in addressing the problems of system fragmentation, poor coordination and lack of individually tailored services, duplications can be avoided and best practices can be added on the selection-list of models to adapt and implement in SEN.

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22

5.1 Grey literature review

The grey literature review has been conducted to trace new ICMs and to explore the need and commitment to develop a strategy addressing the key problems of system fragmentation. By reviewing non-academic and unpublished literature, early signs of ongoing developments of models/innovations and involvement on the issue at hand can be explored and mapped out.

The review was done unstructured with the aim of creating a baseline for the interviews reflecting the theoretical framework. Reports from various ongoing child-centred projects in SEN was located through seminars (arranged by NORCHER), following a snowball effect to further reports. Searching for governmental reports was done through their website, the library databases (University of Oslo) and references used in relevant reports. Relevant reports were the ones emerging from the seminars and reports found on the websites of other governmental bodies (The Norwegian Directorate of Health, The Norwegian Directorate for Children, Youth and Family Affairs and The Norwegian Institute of Public Health). In addition to these two approaches, mentioned international models in the reports were located and further explored through Google Scholar, PubMed and Library databases (University of Oslo and Management Center Innsbruck).

The filtering process of what reports to review was done by selecting the ones where the abstracts matched the topics of: i) having a holistic approach to children and youth services, ii) new models of integration of mental health services, and iii) the need and experience of integrated models for children and youth in Norway/SEN.

This analysis resulted in a list over innovations and provided a greater background to the issue and what is being done within the topic today. The findings were used to provide context and support for the discussions in the semi-structured interviews.

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23

5.2 Semi-structured interviews

For the semi-structured interviews, I aimed at conducting interviews with informants within a range of roles, covering decision makers, user representatives, frontline workers and specialists. This choice is based on an attempt to find agreements towards the models across and within the siloes of which the child and youth seeks care.

5.2.1 Sampling strategy

The municipal level was a natural starting point as most of the involved roles work on that level and because of the already identified municipalities in SEN. As the snowball effect started, the other sectors got introduced continuously.

The municipalities selected for first contact was based on the following criteria:

1. The municipality is within the geographical area of SEN

2. The set of municipalities have a spread across the five counties in SEN

3. Innovate approaches of integrated healthcare services for children and youth with mental health difficulties was noticed in the grey literature search or through other information channels (e.g. their own website or other media).

In addition to the mentioned criteria for selecting municipality, one last criterion was added in the selection of informants within the different municipalities. The criterion was that the set of informants would also include a wide set of roles and backgrounds. The choice of the four criteria was based on the objectives to i) cover a range of roles involved in integrate care services for children and youth, ii) cover the geographical area of SEN, and iii) locate ongoing integrated care projects for children and youth in SEN.

I systematically contacted the different service centres of the selected municipalities to identify key informants working with this topic who would be interested in conducting an interview.

Throughout this sampling process, I approached a total of 31 municipalities/organizations of which 19 provided me with a contact who met the mentioned added criterion. 19 people were then invited for an interview and 9 confirmed the invitation. 7 informants completed both parts of the interview and 2 informants completed the first part of the interview.

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24 Table 1: Characteristics of the informants. Table inspired by (Kriegner, 2016)

County N Male Female Roles represented

Oslo* 4 1 3

Mental health counsellor, municipal psychologist, general practitioner (GP), leaders (primary- and specialist sector),

user representative, senior advisor, specialist in children- and youth psychiatry and health nurse

Original title (Norwegian): Rådgiver, kommunepsykolog, fastlege, ledere (primær- og spesialisthelsesektoren), brukerrepresentant, seniorrådgiver, spesialist i barne- og

ungdomspsykiatri og helsesykepleier

Innlandet 1 1

Vestfold og Telemark 1 1

Agder 2 2

Viken 1 1

Total 9 1 8

* Three of the informants based in Oslo has a national and/or regional mandate and does not only act in the interest of Oslo county, but to a broader extent.

5.2.2 Interview guides

As Sutherland et al. (2017), a modified Delphi method was used as part of the horizon scanning.

Generally, with Delphi method being a consensus method, the aim is to find the extent to which experts or key roles agree on the approaches of the ICMs. In this case, to the degree they i) support the discussed models and ii) agree with each other (Jones & Duncan, 1995).

The interview was conducted in two parts. The first part was an interview based on a list of innovations identified through the grey literature review. The aim of the first interview was to map how many of the listed innovations was known by the key informants and to ask them to add additional innovations to the list.

To reach the mentioned aim of the first interview, the interview guide included a brief questioner with the following questions: 1) are you familiar with [model]? (possible answers:

yes/no)4, 2) do you have any comment on [model]? and 3) do you know any other new models/innovations on this topic and if so, what are they? Having this type of semi-structured

4 As several of the informants would also answer heard about it , this element of subjectivity has been integrated in the overview of familiarity (appendix A)

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25 interviews allow the informants to elaborate on thoughts and ideas around the given topic, in addition to allowing me to get an overview over the informants familiarity with the specific models.

For the third question, a guiding definition of new models/innovations was set for the sake of clarity. It is defined in this thesis as one of the following: i) a possible new way to organize the services, ii) a new mechanism in the provision of services, iii) a systematic change leading to increase access to more unified services for children and youth with mental health difficulties, iv) a new application of an existing intervention/model, or v) a new and developing projects within topic of interest (Feiring, 2020, slide 9). The reason for the specification is to avoid miscommunication around the generally wide term innovation .

After finishing the first round of interviews, the informant s familiarity with the models was registered (see appendix A) and all the additional innovations mentioned by the informants were added to a comprehensive list. Because of the great number of innovations (N=54) collected, a filtering process was needed. The filtering out was based on a combination of i) low familiarity with the models, ii) lack of integration, iii) inaccessible information on the innovations and/or iv) similarity with already listed innovations. Data saturation was reached when all types of models discussed in the theoretical framework was covered and the number of innovations was within reasonable limits for a one-hour second interview.

The result of this process was two comprehensive lists: The first list included the 215 models for discussion. The second list included the remaining 30 models/innovations. Lastly, the list for discussion was structured after two themes: system-level coordination and low-threshold models. The aim of sorting the models after the two themes was to create a better overview over the models. Since the themes are not necessary mutually exclusive, the rather subjective division was based on the large number of low-threshold models and a need to sort the many models in a pedagogical manner for discussion.

The two new and comprehensive lists include short descriptions of all the innovations/models and was prior to the second round of the interviews sent out to the informants (Sutherland et

5 6 models merged to 3 because of high level of similarity

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26 al., 2017). Because one of the aims of the project is to share knowledge, the second list was also included in the interview guide.

The second interview was then based on the first comprehensive list and the informants were asked to score the innovations on a scale from 1 ( none ) to 4 ( high ) on the following aspects:

1. Level of innovation (The NIHR6 Horizon Scanning Centre, 2014, 2015)

2. The likelihood for the innovation to be further implemented in the next 2-107 years (Shekelle et al., 2005)

3. Likely impact on children and youth with mental health difficulties (The NIHR Horizon Scanning Centre, 2014, 2015)

The reasons why the three aspects were chosen to score the innovations are that i) the level of innovation aims at reflecting novelty and to filter out services that are standard practice; ii) the likelihood for the innovation to be further implementation in the next 2-10 years is a measurement used to grasp the main aspect of horizon scanning (i.e. to see which innovations that will most likely to be in the horizon of integrated healthcare services of children and youth with mental health difficulties); and iii) the likely impact on children and youth with mental health difficulties aspects will touch upon the importance/quality of the innovation. The aspects are equally weighted.

The reason why they are equally weighted is to not only look at models most likely to be broaden out in the upcoming years, but to also emphasis on the ones doing it differently and with a high impact on children and youth with mental health difficulties. As described in the theoretical framework, we need to look beyond standard practice in order to change the errors in the system. Ideally, the resulting list will reflect some of the new trends believed to emerge and make a difference.

The following figure (4) sums up the abovementioned aspects of the modified Delphi technique conducted.

6 NIHR is the National Institute for Health Research (UK)

7 Timeframe adapted to the aim of this paper. The timeframe is not absolute but rather serves as a general indication and concretisation of the term future . The choice of timeframe was based on the indicated timeframe used in the grey literature and in other similarly conducted horizon scans in the field.

Emerging trends of integrated care for children and youth’s mental health in South-Eastern Norway - Horizon scanning on new models to be broaden out in the next 2-10 years