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The Development of a Logic Model to Guide the Planning and Evaluation of a

Navigation Center for Children and Youth with Complex Care Needs

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DOI: 10.1080/0145935X.2019.1684192

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The Development of a Logic Model to Guide the Planning and Evaluation of a Navigation Center for Children and Youth with Complex Care Needs

Kerrie E. Luck, Shelley Doucet & Alison Luke

To cite this article: Kerrie E. Luck, Shelley Doucet & Alison Luke (2019): The Development of a Logic Model to Guide the Planning and Evaluation of a Navigation Center for Children and Youth with Complex Care Needs, Child & Youth Services, DOI: 10.1080/0145935X.2019.1684192

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The Development of a Logic Model to Guide the Planning and Evaluation of a Navigation Center for Children and Youth with Complex Care Needs

Kerrie E. Lucka , Shelley Doucetb , and Alison Lukea

aDepartment of Nursing and Health Sciences, University of New Brunswick Saint John, Saint John, New Brunswick, Canada; bCenter for Research in Integrated Care, University of New Brunswick Saint John, Saint John, New Brunswick, Canada

ABSTRACT Most systems across health settings and sectors are not well integrated and do not provide the needed supports, resour- ces, or access caregivers and families require to properly care for their child with complex care needs (CCNs). NaviCare/ SoinsNavi is a research-based navigation center aimed to help facilitate more convenient and integrated care to support the needs of children, youth, and their families using a patient navigator to offer personalized family-centered care. A logic model was developed by the NaviCare team to facilitate the foundational work needed for a successful program, such as program planning; establishing program goals and objectives; as well as providing a logical illustration of how the program will work. This visual representation of the assumed cause- and-effect connections between program components and desired outcomes informed the identification of inputs, activ- ities, and outputs deemed critical for successful program exe- cution, and for the research and evaluation of the program processes, as well as the program as a whole. This provided a safeguard to ensure critical activities were not overlooked, allowed the comparison of the ideal versus the realities of the program, enhanced communication, and highlighted data and resources that are needed for program implementation and evaluation. This article describes the development of NaviCare/SoinsNavi’s logic model, including how this frame- work will be used to guide the planning and evaluation of the navigation center to support achieving its vision that every child and youth with CCNs have access to the required health, social, and education services they require in a timely manner.

KEYWORDS children & youth; complex care needs; logic model; patient navigation; program design & evaluation

Introduction

Children with complex care needs (CCNs) make up only a small subset of the pediatric population; yet, their need for resources and services from the

CONTACT Kerrie E. Luck [email protected] Department of Nursing and Health Sciences, University of New Brunswick Saint John, 100 Tucker Park Road, Saint John, New Brunswick, Canada, E2L 4L5. Color versions of one or more of the figures in the article can be found online at www.tandfonline.com/wcys. � 2019 Taylor & Francis Group, LLC

CHILD & YOUTH SERVICES https://doi.org/10.1080/0145935X.2019.1684192

various systems, including health, social, and education services, can be quite extensive (Breneol, Belliveau, Cassidy, & Curran, 2017; Brenner et al., 2018). Children with CCNs experience multidimensional health and social care needs, and although most have a diagnosis of a medical condition, some do not have an actual diagnosis (Brenner et al., 2018). These multidi- mensional needs are “individualized and contextualized, are continuing and dynamic, and are present across a range of settings” (Brenner et al., 2018, p. 1647). These diverse needs contribute to the various transitions in care these children and their families will experience across their lifespan, including between providers, settings, services, and sectors (Brenner et al., 2018). Consequently, this can make them more vulnerable to discontinuity or gaps in care (Breneol et al., 2017; National Research Council, 2015), which can often lead to limited access to care, fragmented care, higher util- ization of emergency rooms, and the deterioration of both physical and mental health (National Research Council, 2015). Current systems are not well integrated and do not provide the needed

supports, resources, or access caregivers and families require to properly care for their child with CCNs. This can often create confusion and have an impact on continuity of care. This lack of integration also impacts how care is delivered and coordinated when families and children are cared for in different settings, especially when moving back and forth between acute- care settings and the community (Brenner et al., 2018). Brenner et al. (2018) found these issues to be common on an international scale, where the need for better continuity of care, including communication and collab- oration, is increasingly recognized as being imperative to achieve optimal health outcomes. They propose that improving these aspects of care would not only improve support for caregivers and families of children with CCNs, but also the safety and efficacy of the care they receive. They suggest that although many standards of care have been developed to support chil- dren with CCNs, little is still known about how to best implement these standards to improve care (Brenner et al., 2018). Research has identified that Canadian families of children with CCNs

and their care providers find the health care system to be fragmented and difficult to navigate (Doucet et al., 2017). These gaps in care have also been noted as concerns internationally (Brenner et al., 2018). This highlights the dire need for integrated transitional care interventions that are community- based with cohesive linkages to secondary care (usually short-term, based on sporadic consultation) and tertiary care (most complex levels of care, typically institution-based), as well as relevant sectors outside of the health care system (Doucet et al., 2017). In order to address these gaps in care and services, a navigation center for children and families with CCNs was developed. NaviCare/SoinsNavi (www.navicarenb.ca) is a research-based

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navigation center for children/youth 25 years of age or younger with CCNs and their families in New Brunswick. The aim of NaviCare/SoinsNavi is to help address some of the identified barriers to care and facilitate conveni- ent and integrated care to support the physical, mental, emotional, social, cultural, and spiritual needs of children, youth, and their families using a patient navigator to offer personalized family-centered care. With large deficits in healthcare spending and limited funds for healthcare

research, the need for accountability and to ensure programs and services we put in place are accomplishing their set goals, and if not why, are paramount. Despite the growth in patient navigation services for children and youth, there is limited literature regarding outcomes and evaluation in a pediatric context (Luke, Doucet, & Azar, 2018; Sarik, Winterhalter, & Calamaro, 2018); however, evidence suggests patient navigation services in adult populations improve appropriate screening, treatment adherence, coordination, and follow up (Luckett, Pena, Vitonis, Bernstein, & Feldman, 2015; Yan, Carlson, Villarreal, Meraz, & Pag�an, 2017); access to services and resolution of barriers to care (Koh, Nelson, & Cook, 2011); and improves patient experiences and satisfaction (Koh et al., 2011; Trevillion, Singh-Carlson, Wong, & Sherriff, 2015). Although these evaluations showcase the impact of patient navigation services, the lack of uniform patient navigation model or standards (due in part to differences in structures, goals, patient populations and institutional needs) make it a challenge to compare services (Battaglia et al., 2011; Sarik et al., 2018). It is also noted that few evaluations assessing the impact of patient navigation services examine or explain the association between pro- cess measures and outcomes (Battaglia et al., 2011), or provide clarity around program design or functionality (Sarik et al., 2018). Sharing program charac- teristics through the use of a logic model will not only address these gaps, but will also support the facilitation of meaningful program development, ser- vice comparisons, and evaluation. Logic models facilitate the foundational work needed for a successful

program, such as planning; establishing program goals and objectives; designing performance and evaluation metrics; identifying evaluation ques- tions; as well as providing a logical illustration of how a program will work (Goldman & Schmalz, 2006; W. K. Kellogg Foundation, 2004; Wholey, Hatry, & Newcomer, 2004). They are widely used by public health, the not- for-profit sector, community-based agencies, and in the private sector to summarize and illustrate the assumed cause-and-effect linkages of the key elements of a program and can be used at any stage of the program life cycle (Goldman & Schmalz, 2006; Wholey et al., 2004; Wyatt Knowlton & Phillips, 2013). Maynard and Lynn (2016), showcased how representing a symptom-management service for children with palliative care needs through a logic model not only supported program development and

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implementation but also facilitated evaluation of their program. The logic model allowed them to demonstrate the relationships between context, processes, activities, and results, which supported insights for critical suc- cess factors, areas of improvement, development, and research. The logical thinking displayed in the logic model is what Weiss (1997)

refers to as the program theory. Program theory is not intended to be a generalizable explanation of the phenomena, but rather a specific, selective explanation for how the program will have impact (Weiss, 1997). It is an array of assumptions and beliefs about how the actions and activities will bring about change, if this is done, then that will happen (Weiss, 1997). This detail not only supports determining if the program was successful, or not, but also how and why (Weiss, 1997). Such frameworks demonstrate how changing aspects of the current situation through proximal activities and processes are expected to lead to distal improvements in outcomes (Goldman & Schmalz, 2006; Rossi, Lipsey, & Freeman, 2004). When imple- mented properly, this framework provides the user with a tool to produce well-constructed programs that can be easily evaluated through both pro- cess and outcome evaluation (Goldman & Schmalz, 2006). Process evalu- ation focuses on assessing what the program does, where outcome evaluation determines whether the program has achieved its goals as meas- ured through impact (Weiss, 1998). If a program is not clearly represented, it can be challenging to communicate its benefits and thus verify measure, and improve it (Funnell & Rogers, 2011). To our knowledge, there have been no published logic models for a

research-based navigation center for children with CCNs. Considering this, the Navicare/SoinsNavi team set forth to develop a logic model that would help with implementation, determine if the program was operating as intended, as well as ensure identified goals and outcomes could be evaluated and achieved. The remainder of this article will describe the development of a logic model and how this framework will be used to guide the planning and future evaluation of a navigation center for children and youth with CCNs.

Setting and Context

NaviCare/SoinsNavi is the first navigation center for children and youth with CCNs and their families in New Brunswick (NB), a small province in Eastern Canada. NaviCare/SoinsNavi is a research-based bilingual service offered virtually across the province, with the vision that every child and youth with CCNs has access to the health, social, and education services they require in a timely manner. The NaviCare/SoinsNavi team was awarded a grant from the New Brunswick Children’s Foundation to imple- ment the center, which enables the services to be free for its users. The

4 K. E. LUCK ET AL.

center is currently operated out of the University of New Brunswick Saint John Campus and has two patient navigators on staff, one a registered nurse and the other a lay patient navigator. The patient navigators help connect families and care providers with services and resources; help fami- lies understand the services available to meet their needs; support coordin- ation and/or transitions in care; advocate on behalf of families; and support the integration of care within and across health, education and social sec- tors. The team also includes two co-directors, seven volunteers who sit on a family advisory council (parents of children/youth with CCNs or youth/ adults who have experienced growing up with CCNs); and over 20 clini- cians, trainees, and researchers. After a needs assessment phase that con- sisted of interviews and focus groups with key stakeholders (i.e., children and youth with CCNs and their families; key personnel in health, social and education sectors) (Charlton et al., 2017; Doucet et al., 2017); site visits with navigation programs across North America; and two environmental scans of services available for children and youth with CCNs across the province (Charlton et al., 2017) and pediatric navigation programs in Canada (Luke et al., 2018), NaviCare/SoinsNavi was launched as a pilot project in early January, 2017. In the initial planning stages of this pro- gram, the NaviCare/SoinsNavi team, using data compiled from their needs assessment, identified the center’s mission and vision, as well as long-term goals and objectives using a logic model format. The team felt the insights gained through the needs assessment phase, as well as input from the var- iety of team members allowed for a wide array of perspectives to inform their model. With this as direction, the day-to-day operations of NaviCare/ SoinsNavi were contracted out to a company that runs a telecare program in the province. As additional services and in-kind support from the uni- versity and other research networks became more accessible, the pros and cons of using a third-party were reevaluated and the NaviCare/SoinsNavi team decided to implement this program in-house at the university. Due to the dramatic changes in the day-to-day operations, it was determined that the development of a revised logic model at this stage in the program would be the best approach to support the established momentum of the program, as well as to guide implementation and evaluation. The goals and mission of a program are important to guide the develop-

ment of a logic model, particularly around the changes the program hopes to affect. The mission of NaviCare/SoinsNavi is to improve the overall care experience for children and youth with CCNs, and their families, including (1) improving access to health, social, and education services; (2) facilitat- ing the integration of services across levels of care and sectors; (3) improv- ing transitions in care; (4) promoting self-management through teaching families how to navigate services and programs; (5) improving well-being;

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