Review

Responsibility sharing for adolescents with type 1 diabetes: A scoping review

Chronic Illness 0(0) 1–16 ! The Author(s) 2020 Article reuse guidelines: sagepub.com/journals-permissions DOI: 10.1177/1742395320959406 journals.sagepub.com/home/chi

Lisa Gardener1 , Laura Desha1, Helen Bourke-Taylor2 and Jenny Ziviani1

Abstract Background: The term ‘Responsibility Sharing’, albeit poorly defined, has emerged from the diabetes literature, to describe a distinct mechanism for comprehensively managing the characteristic shift in responsibility that underpins the transition to self-management for adolescents. Methods: A scoping review, following the PRISMA-ScR guidelines, distilled the literature from seven databases to answer the questions: What is responsibility sharing? Who are the key stakeholders? What factors affect responsibility transaction? What are its recognized outcomes? How is responsibility shared? Results: Responsibility sharing is a transactional arrangement between youth and their caregiver/ s that functions to repeatedly and flexibly apply ownership to the management of diabetes care tasks, across the course of adolescence. In the main, responsibility sharing was associated with better metabolic and/or psychosocial outcomes. Effective responsibility sharing was seen as being responsive to adolescent capacity and driven by autonomy supportive, sustained communication patterns that enable mutually agreeable responsibility assumption by all stakeholders. Conclusion: Different perspectives on responsibility sharing for adolescents with Type 1 diabetes, and the lack of a universal definition, have led to discordance within the literature about its operationalization and measurement. This paper proposes a definition of responsibility sharing for future researchers to apply. Keywords Responsibility, adolescent, type 1 diabetes, self-management, chronic illness Received 24 January 2020; accepted 5 August 2020

1 School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Australia 2 School of Primary and Allied Health Care, Faculty of Medicine, Nursing and Health Sciences, Monash University – Peninsula Campus, Frankston, Australia

Corresponding author: Lisa Gardener, School of Health and Rehabilitation Sciences, The University of Queensland, Brisbane, Qld 4072, Australia. Email: [email protected]

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Background Decades of rapidly evolving technology have enabled people with Type 1 diabetes (T1D) to achieve precise, flexible, insulin delivery. For young people with T1D, however, such technological advances have not necessarily resulted in improved glycemic control. Seventy-five percent of Australian adolescents with T1D still do not meet glycemic targets, which are highly correlated with long term health outcomes,1 a trend similarly noted in other regions such as the UK and USA.2,3 This disparity in what is possible, and what is being achieved, calls into question the way this population is supported to manage the condition. Type 1 diabetes is managed within the paradigm of self-management – such that the ultimate goal for health care is to support people to take responsibility for their own diabetes care tasks.4 The young age at which T1D is most often diagnosed means that the period of adolescence, characterized by a normative drive to individuate from family, is typically considered a critical time for a transferal of responsibility for diabetes care, from caregiver to adolescent.5 Most children with childhood onset T1D go on to demonstrate some responsibility for their diabetes care by early adolescence,6 share it fairly evenly with their parents by the age of thirteen,7,8 and own the majority of their diabetes care by their late teen years.4,9 Conceptualizing this transition of responsibility as linear and straightforward may, however, bely the reality.3,10 The complexity and burden of the diabetes management regime renders particular challenges for adolescents who must integrate numerous diabetes care tasks into their daily routines, while navigating a more autonomous life stage.11,12 Poor glycemic control, that may be attributed to adolescents eschewing their health care responsibilities, is increasingly understood as a manifestation of adolescents’ efforts

Chronic Illness 0(0) to manage the demands of their health condition alongside the myriad of lifestyle considerations that occur during this developmental stage.5,6 Appreciating this complexity can be difficult for caregivers as young people are typically judicious in managing their information about diabetes care task performance, with communication patterns that are often characterized by secrecy and selective disclosure.13 A recent integrative review of the family’s transferal of responsibility to young people with long term health conditions, found a widespread lack of clarity around the aims, and best support mechanisms for this process.14 A poor transference of responsibility, from caregiver to adolescent, is suggested to represent a responsibility gap, such that responsibilities are either lost, or transferred, without the necessary motivation or capacity, resulting in reduced adherence to the diabetes regimen.15,16 The term ‘Responsibility Sharing’ has emerged in the diabetes literature to describe a mechanism through which families may navigate the complexity of optimally managing diabetes care tasks.12 In this context, responsibility sharing represents an intentional balance of responsibility between the adolescent and their caregivers, though its form and purpose remains ill-defined. This scoping review therefore aims to map and describe the state of knowledge around how researchers define and use the concept of responsibility sharing in the context of the management of T1D among adolescents. More specifically this review seeks to answer the following key questions from existing literature; 1. What is responsibility sharing (how has it been conceptualised and defined)? 2. Who is involved in responsibility sharing? 3. What are the factors affecting the transaction of responsibility? 4. What are the recognized outcomes of responsibility sharing?

Gardener et al. 5. How is responsibility shared, according to research to date?

Method Search methods This review follows PRISMA-ScR guidelines which provide comprehensive recommendations on conducting and reporting a scoping review.17 The dates for the search were chosen in relation to the publication of the seminal Chronic Care Model, which championed the paradigm shift, for health systems, towards a proactive, preventative approach for self-management.18 The following databases were therefore searched for the years 1998 to 2019; Pubmed, Scopus, Psycinfo, Cinahl, Embase, Eric, Aþ education. The search terms reflected a broad approach to the topic, including; T1D, responsibility and associated terms, and management, including self-management. The final search strategy for PubMed can be found in a supplementary file (Table 1). The search results were imported into an Endnote library and duplicates removed, resulting in 3898 unique papers. The articles were initially screened, through title and abstract, by the primary reviewer (LG), to include only peer reviewed papers that were published in English, related to T1D exclusively, dealt with adolescents (as per the WHO definition of age 10–19),19 and focused on behavior rather than pathophysiology of diabetes. All research designs, except for letters to the editor, book reviews and opinion pieces, were considered. A total of 264 papers remained for potential inclusion. Two reviewers (LG, LD) independently screened these papers, by title and abstract, and, where further information was required, the full paper, to exclude papers that did not deal with responsibility sharing. This was defined at this stage of the review as “the process or outcome of the

3 adolescent handling responsibility for diabetes care tasks” (see Figure 1). Where there were differences that could not be resolved a third reviewer (JZ) was consulted to reach consensus. Following screening, a total of 93 papers remained for inclusion.

Data extraction and coding Two data charting tables were developed and are accessible as online supplementary files (Tables 2 and 3). Data charting was conducted by LG and LD with any uncertainty resolved by discussion with JZ until consensus was reached. Table 2 details the key focus and study characteristics of each paper (purpose, method, participants and tool identified to measure responsibility sharing). Table 3 summarizes the way each paper contributed to answering the research questions (definition, factors influencing, stakeholders involved and identified processes of, responsibility sharing). In order to determine whether a quantitative paper dealt with responsibility sharing, the authors’ chosen measurement tools were closely examined for concepts and items directly related to the process or outcome of the adolescent handling responsibility for diabetes care tasks. Where this information was not explicitly detailed in the papers, additional literature was sought on published measures to enable a decision to be made. For all relevant papers, the approaches taken to measurement of responsibility sharing are charted in Table 2.

Results Most of the ninety-three papers included in this review originated in the USA (57%), with a further 12% from the UK, 10% from Scandinavia and a small number from Europe, Taiwan, Canada, NZ or a multinational origin. Fifty papers reported on quantitative research (four [8%] were RCT’s, twenty-nine [58%] were cross

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Records identified through the searching of 7 databases (n=5967) •

A+ education = 3

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Cinahl=482

•

Embase 3004

•

Eric 62

•

Psycinfo 485

•

Pubmed 1051

•

Scopus 880 Duplicates Removed 2069

First reviewer screened by title and abstract (n=3898)

Records Excluded 3634 •

Not published in English

•

Not a peer reviewed article

•

Published before 1998

•

Not exclusively Type 1 Diabetes

•

Not focused on Adolescents (10-19)

•

Deals with pathophysiology not behaviour

First and Second reviewer screened by title and abstract on additional criteria of (n=264): Records Excluded 103

Full text articles reviewed independently by reviewer one and two with disagreements resolved by consultation with third reviewer. (n=161)

•

Not about responsibility sharing (process or outcome of adolescent handling responsibility for diabetes care tasks)

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Not in English

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Not peer-reviewed journal article or original work

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Not about adolescence (10-19 years)

•

Focused on transition from paediatric to adult service

•

If a structured education program is described it addresses responsibility sharing as a primary concern

Full-text articles Excluded 68 •

Not about responsibility sharing n=46

•

Unable to retrieve n=1

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Not peer-reviewed journal article n=16

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Not about adolescence (10-19 years) n=3

•

Not in English n=1

•

Not exclusively Type 1 diabetes n=1

Full articles included in analysis. (n=93)

Figure 1. Included and excluded studies.

sectional, fifteen [30%] were longitudinal studies and two [4%] were psychometric analyses of measures). Thirty-two papers were qualitative, and eleven were reviews.

Participants were predominantly Caucasian with only four papers specifically targeting minority groups. Most papers reported a mix of males and females in

Gardener et al. their samples, but few specifically examined gender differences in relation to responsibility for diabetes care (see Table 2).

What is responsibility sharing? Twenty-two papers explicitly provided insights into the defining features of responsibility sharing (see Table 3). Reaching a specific definition of shared responsibility in adolescence, was plagued by different conceptualizations and inconsistent terminology, with most studies in this review variably referencing the transition of responsibility for diabetes care as transacted, transferred, or shared, in adolescence. Terms such as ‘collaboration’ and ‘involvement’, which incorporated, but did not isolate responsibility to one party, made comparisons between studies difficult.20 While some authors stated a direct operationalization of involvement as responsibility,21,22 others indicated that the construct incorporated both instrumental support (which refers to responsibilities such as making decisions about, or performing diabetes tasks) and emotional support (e.g. to manage diabetes distress).23,24 When these two elements of parental involvement were integrated in the definition of parental involvement,25 fewer conclusions about responsibility sharing could be drawn from the papers. Hanna and Decker,15 sought to understand a concept which is related to, but distinct from responsibility sharing, of what it means for adolescents to assume responsibility for diabetes self-management, and concluded that this is a gradual, individualized process in which the goal for adolescents is ownership of diabetes care tasks. This concept analysis highlighted autonomy as a core tenet, implying that adolescents’ choice and control are important considerations, which distinguish responsibility from ‘compliance’ and ‘adherence’.15 This view, of autonomy as central to the process of assuming

5 responsibility, is widely supported.9,22,26–29 Adolescents themselves describe responsibility as “putting in an effort”, further emphasizing the volitional aspect of responsibility assumption.30 The interface of a complex and burdensome diabetes regime, with the significant developmental and hormonal challenges, is reported to give rise to variable responsibility assumption for diabetes care, for adolescents.31,32 Responsibility assumption for adolescents has therefore been conceptualised as a fluctuating, process, which is heavily dependent on situational factors (e.g. the presence of peers) and the transactional nature of caregiver/adolescent interactions.10,16,31,33 Responsibility sharing has emerged as a distinct concept,12 which accommodates this varying assumption of responsibility, but also places weight on caregivers’ responsiveness to adolescents’ changing circumstances.26,34 When effectively employed this ensures all necessary responsibility is constantly accounted for (being variably assumed by the adolescent and their team),3 and optimal skill development is enabled.16 This “shifting and shared” responsibility is seen to be fundamental to the development of selfmanagement.35 Examining the way authors measure responsibility sharing in the included quantitative papers (N ¼ 39, see Table 2) reveals a rudimentary working definition of the construct. The most commonly used measures were the Diabetes Family Responsibility Questionnaire (DFRQ)36 (used in 18 [36%] of the quantitative papers) and the Diabetes Responsibility and Conflict Scale37 (DRCS – original and modified versions) (used in 8 [16%] of the quantitative papers). In both of these measures respondents use various response scales to indicate, for a series of diabetes care tasks, if each task is predominantly the responsibility of the child, the parent, or if responsibility is shared, thus offering a basic

6 quantification of division of responsibility for specific behaviors between parents and adolescents over an undefined period of time. As noted by Hanna and Decker,15 neither scale allows quantification of the degree of independent decision making by adolescents with regards to the actual sharing or enactment of these behaviors. Some authors also calculate a continuous score ranging from low adolescent responsibility to high adolescent responsibility.38 This continuous measure has been criticized as potentially misleading, as it relegates shared responsibility to a midpoint on a scale in suggestion of a linear path toward full adult responsibility, when analyses should more appropriately consider shared responsibility as a distinct concept.12,34,39 In addition to these measures, a range of questionnaires, scales, and a coded structured interview were identified as capturing further aspects of responsibility sharing, such as reasons for transferring responsibility, parental involvement in decision making, and perceptions of collaboration (see Table 2). No measures were identified in the included papers that quantify responsibility sharing between the adolescent and other stakeholders from within other environments of an adolescent’s life such as school and community. Notwithstanding the variability in measurement to date, the included papers suggested that responsibility sharing for adolescents with T1D has the following features: it describes a distinct, transactional arrangement between youth and caregiver/ s; it functions to flexibly, and repeatedly apply ownership to the management of diabetes care tasks; and it is applicable across the course of adolescence (see Table 3).

Who shares responsibility with adolescents? The majority of studies in this review (Eighty-one papers [87%]) focus on the

Chronic Illness 0(0) responsibility sharing process within the family (see Table 3). Nineteen papers (20%) also refer to health practitioners. There is acknowledgment that youth spend an average of 50% of their time outside of the family40 and as such, becoming autonomous means extending the responsibility sharing network into schools and communities.9 However, only ten (11%) of the papers examined this in the context of schools and only two (2%) focused on other community-based responsibility sharing arrangements.9,41

What factors affect transaction of responsibility? Sixty papers, variably describing the giving and taking (assumption) of responsibility for diabetes care, inform the understanding that transacting responsibility is complex (see Table 3). Adolescents’ normative drive for autonomy may see them seize responsibility for diabetes care, regardless of competency.27 Cross sectional papers report that higher levels of self-efficacy,16,42 executive functioning39 and intrinsic motivation,43 are associated with greater youth responsibility assumption. Greater maturity may support responsibility assumption.44 Older adolescents report greater responsibility4,9,45,46 as do males compared to females.45 A three-year longitudinal study found that depressive symptoms can interrupt responsibility uptake.47 Familial factors impact diabetes responsibility. Cameron et al.45 reported greater assumption of responsibility perceived for adolescents with non-working mothers, and by parental report for adolescents in separated families. Family conflict was reported to limit effective responsibility sharing.8 A number of cross sectional and longitudinal studies concluded that mothers primarily transferred responsibility in response to age or pubertal status, rather than capacity, and this was associated

Gardener et al. with reduced metabolic control.8,39,40,42,48 One longitudinal study found greater retention of responsibility by mothers with higher levels of trait anxiety.49 Lack of parental self-control (e.g. perceived ability to control thoughts, and behaviors) was associated with teens feeling less ease of adherence for their diabetes care.50 Parent and adolescent perceptions around capacity for responsibility are often discrepant. One cross sectional study found that, in comparison to their parent’s perceptions, adolescents report greater levels of competence and independence for diabetes care (with greater disparity associated with poorer diabetes outcomes).48 In one cross sectional study of fifty-four families, fathers were found to perceive their teen to be less autonomous,27 and hold views that are more discrepant to their adolescents, in regard to competencies, than mothers.48 Metabolic control was reported to be better when parental diabetes responsibility was matched to parental perceptions of adolescent efficacy (while adolescent perceptions of self-efficacy were less closely related).46 The type of diabetes regimen has been shown to impact responsibility transaction. One cross sectional study found parents generally retained responsibility for longer when adolescents were using a continuous subcutaneous insulin administration (CSII) regimen compared to multiple daily injections (MDI).51 Qualitative analysis found that new technologies increase the number, and complexity of responsibility sharing arrangements.52 Health professionals were reported to influence family responsibility sharing, for example, through enabling increased maternal collaboration,25 however, their role in explicitly sharing responsibilities (e.g. the management of insulin dose) was not addressed in these papers. Only one paper specifically reported on factors affecting assumption of responsibility for caregivers

7 other than parents. This study stated that teachers report reducing their assumption of responsibility for diabetes care when their accountability is increased, especially if this is couched in terms of legal responsibilities.53

What are the outcomes of shared responsibility? Thirteen quantitative papers directly assessed the outcomes of family responsibility sharing, conceived as a distinct, measurable concept (one RCT, six cross sectional studies and six longitudinal studies). Specific, additional insights were obtained from three qualitative papers and one review (see Table 2). No papers specifically addressed outcomes related to responsibility sharing in the context of the school or community. Two longitudinal studies8,54 and one qualitative study3 suggested that responsibility sharing was associated with better performance of diabetes self-care behaviors, such as more frequent blood glucose monitoring. One RCT reported responsibility sharing was linked with an increased frequency of diabetes care and was associated with a trend to better metabolic control.21 A longitudinal study, over three years, found that responsibility sharing was more important than family conflict in determining better blood glucose monitoring frequency.47 One cross sectional study reported responsibility sharing was associated with less glycemic variability and risk for glycemic excursions when compared to primary parent responsibility.34 The adolescent perception of sharing responsibility with parents, has been reported to be uniquely associated with greater blood glucose monitoring frequency55 and better metabolic control.56 Helgeson12 reported shared responsibility to be particularly adaptive for older adolescents, noting that older adolescents who perceived responsibility was shared (rather than being owned by parent or child)

8 demonstrated better metabolic control and this translated over one year into a prevention of a deterioration in metabolic control for this age group. Responsibility sharing is also reported to be adaptive for adolescent psychological health.26,57 One longitudinal study found children reported less anger and greater self-efficacy when responsibility was shared.12 Shared responsibility was also associated with a lessened impact of diabetes on Quality of Life measures in one cross sectional paper.58 Responsibility sharing was negatively associated with HbA1c over time, for younger adolescents with low executive function (e.g. problem solving, planning, self-regulation).39 Two cross sectional studies did not find an association between shared responsibility and HbA1c.34,55 Another cross sectional paper did not find an association between shared responsibility and diabetes task behaviors, though they conceptualised responsibility as a continuous measure.38

How is responsibility shared? Seventy-five papers contribute to an understanding of the mechanism of responsibility sharing, though largely through a description of elements - none undertook a description of the process as a whole (see Table 3). Thematic analysis of these papers led to categorization of these elements into four broad categories, labeled for the purpose of this review as ‘delineation’, ‘allocation’ and ‘enactment’, which are understood to be constantly connected through ‘frequent, autonomy supportive, communication’.

Delineation as a process underlying responsibility sharing Fifteen papers state the importance of clearly articulating responsibilities for diabetes management in families, schools and communities (see Table 3). This

Chronic Illness 0(0) clarification (delineation) of responsibilities is suggested to mitigate ambiguity,7 and highlight issues of accountability59 and competency.60 Qualitative research points to a connection between clarification of roles and responsibilities and more effective youth engagement in diabetes care tasks.3 Cross sectional studies note higher levels of discordance about levels of responsibility, between younger adolescents and their parents, proposing a need for greater communication around articulating and clarifying responsibilities for this age group.34,61 Although few studies investigate the school responsibility sharing process, the school plan is identified as an important tool for the purpose of delineating responsibilities at school.62–64

Allocation of responsibility as a process underlying responsibility sharing The process of effectively assigning responsibility has been described as an explicit,55 interactive flow of dialogue between key stakeholders, enabling an expression of both caregiver and adolescent priorities in order to promote engagement and mitigate discordance.3,21,32,63,65 Caregivers who offer knowledge and support to enable matching of allocated responsibility to executive function, competence, efficacy or maturity, may effectively address related disparities that have been associated with reduced metabolic control.26,39,42,44,60 Twenty-nine papers describe the communication that drives an optimal allocation of responsibility, as ‘negotiation’, with six reporting agreement as a critical outcome (see Table 2). A qualitative study seeking views on barriers to self-management, from a diverse range of diabetes care providers, described the importance of supporting families to clarify and reach agreement around responsibility.66 In cross sectional analyses,

Gardener et al. higher levels of responsibility agreement between parents and adolescents have been associated with better metabolic control,65 particularly in younger adolescents.61 A large cross-sectional study based on data from 21 centers in 19 countries found that the critical determinant of metabolic control was agreement, between parent and child, on responsibility for blood glucose testing.45 Discrepancies in adolescent-parent perceptions of responsibility have been found to be associated with increased parental distress,48 particularly where there was disagreement over who accepted responsibility (not where the discrepancy meant no-one accepted responsibility). There were no similar associations found between responsibility discrepancies and adolescent distress.67

Enactment of responsibility as a process underlying responsibility sharing An important part of the responsibility sharing process, for outcomes such as glycemic control, is the enactment, or assumption of responsibility, which is manifested by demonstrating ownership of either the performance or decision making of diabetes care tasks.68 Five papers use the term ‘teamwork’ to describe the collaborative effort that is the enactment of shared diabetes responsibility (see Table 3). Existing tools measuring responsibility sharing focus on broadly capturing responsibility distribution in the family context only (Table 2) representing an important gap in the literature for the measurement of responsibility for other stakeholders in health care, schools and community settings. Some authors have made a calculation from the DFRQ of the overall percentages of care tasks for which responsibility lies with parent, child or is shared, and others examined parent/child discordance when both complete the measures.34,39,61 Two papers

9 suggest that the meter/pump download may offer an additional objective record of responsibility assumption.2,26

Frequent, autonomy supportive communication to connect the processes of delineation, allocation and negotiation Frequent communication is suggested to enable repetition of the processes of delineation, allocation and enactment.3,4,27,63 This constant repetition is responsive to the normative fluctuation in adolescent lifestyles, and functions to ensure all necessary responsibility is assumed by at least one of the stakeholders at any one time.3 The repetitive process has been proposed to promote skill development, as adolescents are supported to advance their competency in one domain while caregivers support other areas.16 Twenty-four papers identified the importance of caregivers using autonomy supportive communication with adolescents, to share responsibility (see Table 3). The level of adolescent responsibility assumption has been suggested to be reflected in the degree of communication adolescents offer in health consultations, with a shared amount of communication indicating shared responsibility.69 Appropriate health professional communication can enable youth’s autonomy,70 allow parental responsibility to become more transparent71 and alter maternal effort resulting in increased collaborative Two papers describe involvement.25 improved diabetes related outcomes for the autonomy supportive interventions of Guided Self-determination72 and Shared Decision Making,73 though these processes appear to encompass, without isolating, responsibility sharing. A longitudinal study over two years concluded that parental guidance that promoted active child involvement in decision making, increased adherence.74 Longitudinal studies have shown that

10 parental autonomy support when sharing responsibility was associated with more adolescent responsibility assumption,22 greater frequency of diabetes care behaviors, better metabolic control54 and sustained responsibility assumption for dietary care.75

Discussion Within the context of care for people with T1D, the goal of attaining responsibility for diabetes care tasks is fundamental to the development of diabetes self-management (DSM).35 For adolescents, this process is complicated by the demanding developmental stage they are traversing. Current literature suggests that an important mechanism for the management of this complexity may be found in a sustained state of responsibility sharing between adolescents and caregivers.12 This is in line with current International Society for Pediatric and Adolescent diabetes (ISPAD) clinical guidelines that recommend that parents be supported to move gradually from “full responsibility” to “co-operative care with the adolescent”76 though the form of this change is not well defined to date. This literature synthesis demonstrates the current state of understanding around responsibility sharing for adolescents with T1D. Unlike the process of transfer, which functions to see something “moved from one place to another”, sharing occurs when something is, had, or used “at the same time as someone else”77 supporting the concept of a dynamic, coordinated effort in responsibility management. This underscores the finding of this review that responsibility sharing is a construct that is measurable, and related, though distinct from the process of transfer.12,34,39 ‘Sharing’ sits with a cluster of terms that variably describe the transactions of responsibility that characterize adolescent diabetes management. Reaching a specific definition

Chronic Illness 0(0) was made difficult by the lack of clarity in the way these terms are used in addition to shortcomings identified in tools which explicitly purport to measure responsibility sharing. Future papers should define the use of terms relating to responsibility and consider isolating responsibility from constructs such as ‘parental involvement’. Notwithstanding these limitations, this review found responsibility sharing can be defined as a mechanism for diabetes management that functions to repeatedly, and flexibly, apply ownership to diabetes care tasks, through the enablement of autonomy supportive transactional relationships, between all stakeholders. Stakeholders were identified as adolescents, parents, health professionals, school staff and community caregivers. The importance of adolescent autonomy to the process of responsibility sharing, fits well with broader literature that describes autonomy as a central tenet to their engagement in diabetes care.43,75 Given that responsibility sharing promotes an expectation for active engagement in the process, for other stakeholders, the role of autonomy for other stakeholders (e.g. parents, teachers) merits further research. The majority of studies that have examined the outcomes of responsibility sharing for adolescents have found it was linked with higher frequency of diabetes care behaviors, and positive psychosocial outcomes (see Table 3). Although these studies did not find responsibility sharing to be linked with improvements in HbA1c, it was associated with a reduction in metabolic deterioration and reduced glycemic variability, which both represent important metabolic outcomes for this population.12,21,34 The reported benefits of sustaining this responsibility sharing throughout the course of adolescence12 connects well with literature that supports the importance of caregiver involvement well into emerging adulthood.78

Gardener et al. Intentional sharing of responsibility in the family context, is suggested to mitigate the effects of developmental, cognitive or behavioral attributes that may limit an adolescent’s competency or motivation for diabetes care.26,39 This may not be true for young adolescents with low executive function, thus further research is needed in relation to the timing of the transition from parental to shared responsibility.39 New technologies, such as continuous glucose monitoring (CGM), are suggested to add complexity and burden to the responsibility sharing arrangements and deserve further investigation.51 Whether the responsibility sharing process works to simply effect a shared burden of responsibility,50 or provide a scaffold from which to build competencies, is an important area for future research.12 Finally, this review endeavored to collate the information around the process of responsibility sharing and identified this to involve repeated communication to connect the key elements of delineation, allocation, and enactment of responsibility. Autonomy supportive negotiation, between key stakeholders, that is referenced to competency and self-efficacy,42,48 and works toward a position of agreement on allocation of responsibility, was supported (see Table 3), and is in line with current ISPAD guidelines.79 The ideal form of this negotiation is yet to be scrutinized, and may offer an important target, particularly for supporting continued parental involvement, which is widely advocated for adolescents with T1D.76 Enactment of responsibility is the ultimate aim of the responsibility sharing process, with stakeholders working as a team to complete their assigned diabetes care tasks. Evidence to substantiate achieved responsibility sharing is impeded by the lack of psychometrically sound and clinically relevant measurement tools. While some measures capture basic quantitative

11 descriptors of division of responsibility between parents and adolescents, multiple measures are currently needed to examine responsibility sharing from the many angles identified in this scoping review to be pertinent to the construct (i.e. delineation of responsibility, allocation, enactment). A more comprehensive review of relevant measures is warranted to support the development of a measure which dismantles these relevant parts of shared responsibility, captures the process between all relevant stakeholders, across different stages of adolescence, and has clinical utility for interventions that seek to directly address responsibility sharing. Further, the absence of tools that capture the wider range of ways that responsibility sharing is enacted within the family and health care team, to the school and wider community, calls for both development of measurement tools and subsequent efficacy research. Overall, the most prominent gap in the literature is the lack of exploration of responsibility sharing in the time adolescents spend outside of the family environment. This disproportionate attention to the familial context has been reported elsewhere.80 The Chronic Care Model18 asserts that an acute model of episodic care is not best placed to serve people managing chronic health conditions, instead calling for a heavily preventative, proactive approach that mobilizes community resources. The school environment is reported as particularly significant80 though there is a notable dearth of informative research in this area.59,81 This suggests it is important to extend understandings around the intersection of teacher and adolescent responsibility allocation and enactment, at school, in order to meet goals of safety and optimal participation in the school environment. Rigorous scoping review methodology has enabled a large, disparate body of literature to be drawn together to frame the evolving concept of responsibility sharing

12 and highlight gaps in current knowledge. Due to the size of this review critical appraisal was not done. The studies varied considerably in their methodological approaches and rigor, and a future study could examine the quality of subsets of the papers. Another limitation was the exclusion of grey literature which, if included, may have enabled a wider sense of practice in this space.

Conclusion This paper progresses the emerging understanding that, rather than simply representing a transient phase of diabetes care in adolescence, sharing responsibility may be seen as a process, that can be purposefully applied across the course of adolescence, to support comprehensive responsibility assumption and enable developing adolescent self-management. It is suggested that, through the enablement of autonomy supportive relationships between all stakeholders, effective responsibility sharing functions by flexibly applying competency-based, mutually agreeable, ownership of diabetes care tasks, within the circumstances of the adolescent’s activities of daily life, and across the multiple contexts in which they live. A small number of quantitative studies link responsibility sharing to better metabolic, psychosocial and quality of life outcomes for adolescents. Information around the process by which this might occur, however, lacks detail and responsibility measurement tools need further development. Despite the significant time adolescents spend outside of the family, and the normative individuation process that sees a distinct separation of adolescent’s priorities from those of their families, there is very limited research on responsibility sharing outside of the family context. Future efforts should be directed at developing measurement tools and furthering understandings of the optimal process for responsibility sharing, in terms of communication modality and frequency, at

Chronic Illness 0(0) home, and in particular, in the school and community environments. Acknowledgements N/A.

Contributorship LG, HBT and JZ conceived the study. LG researched the literature. LD, LG and JZ analysed the results. LG wrote the first draft and subsequent drafts were edited by LD, JZ and HBT. All authors reviewed and edited the manuscript and approved the final version of the manuscript.

Declaration of conflicting interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Ethical approval N/A.

Funding The author(s) received no financial support for the research, authorship, and/or publication of this article.

Informed consent N/A, because this work is a review of published studies of anonymized data.

Guarantor LG.

ORCID iD Lisa Gardener 4618-2917

https://orcid.org/0000-0002-

Supplemental Material Supplemental material for this article is available online.

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