This study aims to explore perspectives of ‘experienced continuity of care’ (i.e. the experience of coordinated and seamless care) of caregivers*1 of children with Autistic Spectrum Disorder (ASD) when they are discharged from Early Intervention Teams (EITs) and transferred to multidisciplinary Primary, Community and Continuing Care Teams (PCCCTs). Specifically, the study aims to explore caregivers’ experiences of a number of dimensions of continuity including relational (where one or more named health care providers are available with whom the service user and caregiver can establish and maintain a therapeutic relationship), informational (where information on prior events and personal circumstances is used to give care that is appropriate for each individual) and management continuity (the idea of consistency of management over time and in line with the service user’s changing needs) in this cross- boundary context (Saultz 2003).

ASD is a complex neurodevelopmental disorder characterised by a myriad of impairments in communication, social functioning, restricted interests and other associated co-morbidities (Kogan et al. 2009). Given the complexity of the condition, provision of care for the child with ASD, along with support for caregivers, involves engagement with a variety of services that cross many professional, organisational and agency boundaries (Mackintosh et al. 2012). Whilst the need for integration and coordination of these services is considered critical to ensuring a seamless care experience for the child and family, problems with coordination of services within teams are consistently reported within the literature and are cited as a considerable source of stress for caregivers (National Disability Authority 2014). However, despite this, there is a significant dearth of research focusing on caregivers’ experiences of continuity of care when children transition from one health care team to an entirely new team of professionals situated in a different physical and infrastructural context. This study aims to address this gap in knowledge.

It is hypothesised that the transition from EITs to PCCCTs may potentially lead to what is referred to in other health and social care arenas as ‘forced’ or ‘involuntary discontinuity’ of care (Flocke et al. 1997) for children and their caregivers. Whilst the central focus will be on capturing caregivers’ perspectives of continuity, the views of a range of service providers and administrators from EITs and PCCCTs will also be explored in an effort to contextualise caregivers’ accounts and explore proposed solutions to any problematic experiences reported.

The primary and central aim of this multi-perspective qualitative study is to explore caregivers’ perspectives of experienced continuity of care following the transition from EIT services to PCCCTs in the 12 month period post transition. Service providers’ perspectives will also be explored in an effort to contextualise caregivers’ accounts and explore solutions to problematic experiences reported.

The specific objectives of the research are to explore:

1. caregivers’ perspectives on constructions of continuity of care of relevance to this context with particular reference to informational, relationship, management, team and cross boundary dimensions.
2. caregivers’ perspectives on experiences of these various dimensions of continuity within the 12 month period following discharge from the EIT and transitioning to the PCCCT.
3. caregivers’ perspectives regarding any problematic experiences of various dimensions of continuity of care in this context.
4. service providers’, managers’ and administrators’ perspectives on continuity of care in this context to contextualise caregivers’ accounts and explore potential solutions to address any problematic experiences outlined in objective (iii).
5. To disseminate findings to all participants as well as to a variety of stakeholders with responsibility for delivery of services to preschool and school-aged children with ASD and their families.

Whilst there are literatures of relevance to many of the multidisciplinary strands of the present proposal including, for example, those highlighting different conceptualisations of continuity of care in primary health/social care teams, the complexity of presentation of children with ASD and their associated care journeys, the role and function of multidisciplinary teams in providing services for ASD, studies of caregivers’ perspectives of ‘experienced continuity’ following discharge from one health/social care team to another in the early years (0-6 years) are almost entirely absent. Database searches for literature that relates specifically to the quadrangular relationship between ASD, caregivers’ perspectives, transitions and cross boundary continuity of care in health/social care teams generated few results. In summary, the following literatures and themes have and will continue to inform the study aims and objectives and conceptual basis.

Over the last fifty years, continuity of care has consistently been referred to as a core attribute or value of health and social care services particularly in the context of primary and continuing services provided in the community (Stokes et al. 2005). This is because continuity is widely considered as an essential ingredient for improving quality in any health/social care system (Haggerty et al. 2003).

There are varying interpretations and definitions of continuity presented in the literature but these are primarily focused on the service provider perspective (Freeman et al. 2001). Despite this, there has been a recent consensus that continuity comprises three core elements, i.e. relational continuity which points to an ongoing therapeutic relationship between a service user and one or more service providers, informational continuity which means that information on prior events and personal circumstances concerning the service user is used to provide care that is appropriate for each individual, and management continuity which ensures a consistent approach to the management of a health condition that is respondent to a service user’s changing needs (Saultz 2003). Other conceptualisations include that of team continuity in the case where care is provided by a number of multidisciplinary health/social care providers and, cross boundary continuity, which occurs when a service user’s care crosses health/social care organisational boundaries (Freeman et al. 2001). A final overarching conceptualisation of continuity is that of experienced continuity, i.e. the experience of coordinated and seamless services from the perspective of the service user (Freeman et al. 2001). This latter concept has received much less attention in the literature than the previously aforementioned service provider perspectives.

These dimensions of continuity are widely considered as essential ingredients for improving health care quality, particularly for those with chronic and complex health and social care problems (Servellen et al. 2006) such as is the case with ASD. Despite this there is limited literature focusing on experienced continuity of care in the context of ASD. A comprehensive search of relevant databases did not reveal a single study focusing specifically on service user’ or caregivers’ perspectives of experienced continuity of care in ASD in the early years. Whilst some studies exist that report on the concept of ‘coordination of care’ (e.g. see Sobotka et al. 2016, Carroll 2011, Brachlow et al. 2007), importantly, this is a related, yet conceptually different attribute of care as it refers to the organisation and coordination of services from the perspectives of service providers, not service users or their informal carers (Starfield 1998).

Furthermore, the role of and need for social science theory in conceptualising about constructions and experiences of continuity has been consistently highlighted (Diederiks and Bal 1997). Some sources have pointed to the need for more qualitative research with a focus on the service user’s and carer’s perspective, particularly that which would address continuity in terms of the potentially complex world of the service user’s personal health and social care journey (Philipsen and Stevens 1997). In particular, the need for more studies focusing on the ‘dynamics of health care trajectories (i.e. journeys), in context, which gives rise to changing needs’ (Freeman et al. 2001) has been highlighted. It is argued that a focus on this concept of health care journey may unveil something of the processual experiences of continuity over time, particularly important in the case of those with ASD and complex needs that span many health and social care boundaries.

Autistic Spectrum Disorder (ASD) is defined as a complex lifelong group of neuro-developmental disorders characterised by communication and social deficits, restricted interests and stereotyped patterns of behaviour (Kogan, Bloomberg and Schieve, 2007). These core deficits are present throughout life for the child with ASD but the impact and manifestation of these difficulties will differ with age, developmental and health status and with the presence of any additional disabilities or morbidities including, for example, cognitive impairment, attention deficits, sensory issues, depression, etc., that will place further restrictions on the child’s ability to function and remain well (Lindgren and Doobay 2011). This complexity of presentation is associated with an accompanying high dependency on and use of a variety of health/social care services, unmet health needs, increased parental/caregiver stress and family burden (American Psychiatric Association (APA) 2013).

As ASD is a lifelong disability there is a significant need for children with ASD and their caregivers to actively engage across a continuum of services, organisations and agencies to ensure the complexity of the needs of the child and family are met (National Disability Authority 2014). This is particularly evident in the early year’s period (0-6 years) which involves an extensive and complex diagnostic and early intervention process. In the Irish context, a complex care pathway or journey is in place for children in the preschool and school-aged periods. For example, in the 0-6 year period, service provision for children in the Irish system is located in what are referred to as Early Intervention Teams (EITs) involving a variety of bio-medical, therapeutic (e.g. Speech and Language Therapy-SLT, Occupational Therapy-OT), psychology (e.g. developmental and clinical psychology and counselling) and social (e.g. Social Work-SW and Social Care Practice-SCP) services. Following this period they are discharged from EIT services and undergo a transition to multidisciplinary, community- based primary health care teams referred to as PCCCTs (Carroll et al. 2013).

Whilst best practice consistently dictates an integrated, coordinated and seamless approach to care of the child with ASD and his/her family, it has been cited that current PCCCT services can vary from ‘robust, comprehensive and integrative to, isolated, patchy and ineffective” (Health Service Executive 2012). This type of variation and inconsistency in service provision has been shown to be a significant source of stress for parents both in national and international contexts. For example, studies have consistently demonstrated that parents experience a lack of coordination of care in the context of ASD when it is delivered by multidisciplinary teams. This is characterised by a lack of coordination activities or plans (Sobotka et al. 2016), systemic issues and poor information sharing practices amongst professionals (Carroll 2011), geographical dispersion of members of teams and gaps in service provision (National Disability Authority 2014). Whilst these findings are valuable in informing us about coordination issues, results are only relevant to the context of care provided within single health care teams. In other words, they don’t address the experience of caregivers when children transition from one health care team to an entirely different one in a new and unknown physical and infrastructural context.

It has been noted that whilst transitions are perceived to be an important aspect of continuity they are rarely studied or explored in the context of ASD (Rogers and Zeni 2015). The literature search here did not reveal any published evidence on the processes, models and outcomes of transition and continuity of care experiences in ASD in the early years. Despite this, appropriate coordination and continuity of care is said to be particularly important at times of transition from one service or team to another to ensure that the child and family does not miss out on appropriate and effective service provision (National Disability Authority 2014). Furthermore, the need for ‘transition planning’ when individuals with ASD are transitioning from one team to another along the care continuum has been advocated (Rogers and Zeni 2015).

Where transitions have been researched in the context of ASD, studies have tended to focus on later transitions in the ASD trajectory, such as the transition from paediatric services to adult based services (Kuhlthau et al. 2014) or on educational as opposed to health care transitions (e.g. see Shogren and Plotner 2012). Furthermore, once again, the focus on the service user’s or caregiver’s perspective has received much less attention than the provider perspective in this context.

In summary, the literature further highlights a significant dearth of literature exploring experienced continuity in the early years for children with ASD and their caregivers when provision of care crosses or transitions health and social care team boundaries.

The intention is that this solution-focused study will specifically inform the development of recommendations about improving service user (i.e. children’s and caregivers’) experiences of continuity of care in the lead up to, during, and following the transition period from EIT services to PCCCT services. This information will be vital in informing the development of plans for the implementation of School Aged Disability Teams in line with HSE policy on Progressing Disability Services for Children and Young People in the Irish context (National Disability Authority 2014). Furthermore, this information will be of relevance to similar international EIT/PCCCT type services and structures.Results of the study will also provide the basis for informing a quantitative measure of continuity of care experiences or ‘continuity of care index’ for service users and caregivers in the context of ASD.

Furthermore, the study will make an important contribution to theoretical advancements in relation to conceptualising about continuity of care and care journeys in general and in the specific context of ASD. With some exceptions (e.g. Gallagher et al. 2013, Alegría et al. 1997, Low 2004), the vast majority of qualitative studies about continuity of care in health/social care in the management of chronic long term conditions are atheoretical, even though the need for social science theory in conceptualizing about experiences of continuity in this context has been highlighted (Diederiks and Bal 1997). Incorporation of a health-sociological theory, the Chronic Illness and Care Trajectory Framework -CICTF; Corbin and Strauss 1991, Strauss et al. 1985) explained and outlined below will make an important contribution to developing existing definitions and constructions of this highly complex and multidimensional construct.

Research Design

Proposed Methodological Framework

Proposed Theoretical Framework

Study Context

Ethical Approval

Proposed phases of data collection

Sampling of Participants:

Data Collection:

Data Analysis:

Dissemination:

The timeframe for the full-time MA by research project is 24 months. The research is scheduled to commence in month 1 and will be completed by month 24.

Specific Deliverables (as indicated with *in the schedule below) are as follows:

• Literature Review: This will be ongoing throughout the project and will occur iteratively with the data collection and analysis process.
• Research Design: Finalised version to be delivered by the supervisor by end of month 6 though this will be refined and adapted throughout the programme of research where indicated.
• Identify Sites and participants: Final list and confirmation of sites and participants to be submitted to supervisor by month 7 for the caregiver phase and month 10 for service provider phase.
• Data Collection: Raw data to be collated by month 15.
• Draft thesis to be completed by month 21 with final submission in month 24 (see Table 1).

Table 1. Download as CSV 

Time-frame for the Project

Activity/Months	1-3	4-6	7-9	10-12	13-15	16-18	19-21	22-24	Deliverable
Literature Review	X	X	X		X		X		Literature Review complete
Finalise Research Design	X	X							Research Protocols
Confirm sites/participants for both arms		X	X						Research Strategy
Conduct research activities			X	X	X	X			Raw Data
Data Analysis			X	X	X	X			Transcribed/Coded data
Write-up findings						X	X	X	Final thesis Report

The author would like to acknowledge the support offered and funding granted by the President’s Bursary Scheme at Sligo Institute of Technology, Ireland.

This research proposal was granted funding for up to 150,000 Euro to fund a full time Research Masters/PhD students at Sligo Institute of Technology, Ireland.