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Abstract

PURPOSE:

The purpose of this article is to provide perspectives pertaining to the importance of fostering comprehensive self-management competencies of AEA-SHCN, with attention directed to AEA with spina bifida based upon the Health Care Transition Research Consortium Health Care Transition model. This article is based upon the plenary presentation given at the Spina Bifida 3rd World Congress, entitled, Self-Management and Health Care Transition: Trials, Tribulations and Triumphs.

METHOD:

A historical perspective of healthcare transition initiatives and best practice guidelines is provided that have influenced the field of research and practice. Relatively scant attention has been directed to the development and refinement of self-management competencies prior to the transfer of care and transition to adulthood. Against this backdrop of the predominant framework of care focused on the transfer of care, a discussion of our team’s experience with the provision of healthcare transition services and the complexity of addressing the self-management needs of the adolescents and emerging adults (AEA) with spina bifida served in the Movin’ On Up HCT program will be presented.

RESULTS:

Through our clinical and research healthcare transition experience, insights pertaining to self-management will be presented.

CONCLUSION:

The acquisition of self-management knowledge and skills is a complex process that extends far beyond learning the fundamental skills of daily condition management.

Keywords

Spina bifida health care transition self-management

1. Introduction

Health care transition is a relatively new field of practice and science, although more concerted clinical attention and research efforts are being directed to develop services based upon emerging empirical evidence to effect improve health and psychosocial outcomes for adolescents and emerging adults (AEA1

¹
Emerging adulthood, based upon the work of Arnett (Arnett JJ, & Tanner, J.L. Emerging adults in America. Coming of age in the 21st century. Washington, D.C.: American Psychological Association; 2006. Arnett, JJ. A. Emerging adulthood. A theory of development from the late teens through the twenties. American Psychologist. 2000; 55(5): 469-80).

) with special health care needs and disabilities (SHCN2

For the purposes of this paper, SHCN will refer to special health care needs and disabilities.

). The recognition of this service need is bolstered by the growth of the population of AEA with SHCN whose life expectancy has been extended into adulthood, and for some groups of adults with childhood acquired chronic conditions well into middle age and beyond. Estimates of children diagnosed with a chronic condition who survive into adulthood range from 90% to 98% [1, 2]. For example, over 90% of infants with CHD are expected to survive into the second decade of life [3]. Recent reports indicate the mean age survival of individuals born with cystic fibrosis is 36.8 years in the United States and 48.5 years in Canada; researchers attribute differences with the access to care and transplantation [4]. The life expectancy for individuals with spina bifida is highly dependent upon the severity of diagnosis, with 60% expected to survive into the second decade of life [5].

It is estimated that nearly a million adolescents with SHCN enter adulthood annually, creating an unprecedented challenge for the adult system of health care to respond to create the capacity needed to treat their complex care needs [6]. As reported in the 2009/2010 National Survey of Children with Special Health Care Needs, just 40% of adolescents with SHCN received health care transition anticipatory guidance that included preparation for the transfer of care to adult services thereby disadvantaging them for accessing ongoing primary and specialty care [7].

The pediatric interdisciplinary professional community has undertaken the preliminary steps to effect the changes needed within the systems of health care to improve the preparation of AEA with SHCN that involves the transfer of care, referring to the event of changing providers and health care transition-the comprehensive service process as described in greater detail throughout this paper. These developments are intended to facilitate the transition of AEA with SHCN from the pediatric and child systems of care (e.g. health care, secondary education); to establish their health care consumer status within the adult system of health care; and, to promote their engagement in other systems of care, such as postsecondary education, employment, and social services to enable their full adult community participation to the extent possible [8, 9, 10, 11]. The goal of fostering the adolescent’s development to become a literate and responsible consumer of health care services during this period of health care transition requires the acquisition of skills and knowledge enabling self-reliance, self-determination, autonomy and independence.

Interestingly, the pediatric health care community has responded by emphasizing the process of the health care transition as pertaining primarily to the transfer of care rather than a more comprehensive framework of care as conceptualized by the Health Care Transition Research Consortium Health Care Transition Model (HCTRC HCT). This model recognizes the essential foundation needed for AEA with SHCN to achieve the optimal goals associated with the developmental competencies related to adulthood that include the acquisition of self-management knowledge and skills to manage their chronic care needs as independently as possible [12].

This article, based upon the plenary presentation given at the Spina Bifida 3 ${}^{\text{rd}}$ World Congress, entitled, Self-management and Health Care Transition: Trials, Tribulations and Triumphs, will provide an overview of our team’s experience with the provision of HCT services and the complexity of addressing the self-management needs of the AEA with spina bifida (SB) served in the Movin’ On Up HCT program based upon the HCTRC HCT model [13].

A brief background of the development of HCT initiatives and best practice guidelines that has guided and influenced the development of practice models and research for nearly the past three decades will be presented. The relevancy of presenting this historical perspective is to provide a contextual understanding of dominant HCT service emphasis on the transfer of care while less attention was directed to the development of self-management knowledge and skills. The influence of the emphasis on the transfer of care is evident in systematic reviews that examined various dimensions of health care transition service models that have been reported [14, 15, 16, 17, 18]. Of relevant interest is the paucity of evidence pertaining to exploration of self-management education as integrated within HCT models of care. Self-management has been indirectly and insufficiently investigated in HCT studies, especially as it pertains to lifestyle circumstances. The discussion will then be directed to describing the insights and understanding our team has acquired over the years. The experience of developing, implementing and continuously refining our HCT service model has informed us of the complex nature of self-management resulting in its application more broadly to lifestyle domains as represented in the HCTRC HCT model [12].

2. HCT initiatives, best practices and self-management

For nearly three decades, efforts have been undertaken by major pediatric and adolescent professional organizations and the federal government to facilitate the development and implementation of HCT services and supports for AEA with SHCN. In the late 1990s, the Maternal Child Health Bureau, Division of Children with Special Health Need (MCHB, DCSHN) provided funding for the national initiative, Healthy and Ready to Work, composed of community-based pilot projects to effect the development and implementation of HCT services and programs [19, 20, 21]. Out of the laboratories of these early programmatic efforts, the beginnings of HCT resources, services and supports were developed. The commitment of the MCHB, DCSHN continues to this day with the extramural support of Got Transition, Center for Health Care Transition Improvement [22]. As well MCHB, DCSHN was involved in working with the Title V Programs for Children with Special Health Care Needs, the state-federal system of care partnership to provide interdisciplinary services for eligible children and adolescents with SHCN and their families, which included HCT as a service priority.

In 2002, the American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians-American Society of Internal Medicine drafted a consensus statement on HCT whose goal was to maximize lifelong functioning and potential, a holistic perspective of HCT. The services recommended by the consensus statement are based upon a developmental framework, which are focused on the provision of health care services (e.g. medical care and ancillary health services). The importance of acquiring the core knowledge and skills for self-management are acknowledged as well as presented in Table 1 [8]. Later, the Clinical Report co-authored by the American Academy of Pediatrics, American Academy of Family Physicians and the American College of Physicians, based upon the 2002 Consensus Statement [8] continued to emphasize the holistic outcome of HCT services for all adolescents. This clinical report provides the algorithm protocol with an implementation time line spanning from early adolescence to emerging adulthood. The document refers primarily to the acquisition of self-management skills as it pertains to the AEA’s procedural and surveillance tasks for managing their SHCN. Self-management competencies as related to the broader skill sets associated with living with a SHCN and its impact on the AEA’s lifestyle are not directly addressed. The primary focus of this algorithm is predicated on the transfer of care [10].

Table 1
Consensus report six HCT service model recommendations [8]

Knowledge and skills for self-management

Identified HCP responsible for transition planning

Identification of core knowledge and skills needed for HCT

Portable and accessible medical summary

Written HCT plan by age 14 reviewed and updated annually

Primary and preventive care guidelines apply (i.e. Bright Futures)

Access to affordable and uninterrupted health insurance

Recently, the Society of Pediatric Nurses (SPN) issued a position statement which distinctly identifies the differences between HCT and transfer of care. The SPN position statement deliberately separates the event of the transfer of care from the process of HCT. Although these concepts are distinct they are interrelated constructs as well. HCT is recognized as a process involving a broadly defined construct of self-management involving more than SHCN procedural tasks. This position statement extends the role of self-management to address the SHCN impact on daily living [23].

It is apparent that many issues and questions remain as it pertains to self-management and its pivotal role in health care transition. Our clinical and research experience in the field of HCT and the importance of self-management as a critical component of the service model is described below.

3. Self-management and health care transition – our journey of understanding

Our enlarged understanding of self-management and its role in HCT began with an extramurally funded pilot project as part of the Healthy and Ready to Work Initiative in 1997 wherein we partnered with an interagency transition coalition-based in education, the Southern California Transition Coalition, one of four local coalitions affiliated with the California School to Work Interagency Transition Partnership [20, 21, 24, 25]. Our early efforts were focused on community-based efforts, which were pivotal in the development of an interdisciplinary HCT model of care based upon a non-categorical and lifespan approach and the principles of family-centered and adolescent-centered care with a strong community-based and lifestyle focus.

One of our project activities involved conducting a number of focus groups with diverse community agency representatives, parents and consumers. We learned new and very different perspectives about self-management that indicated those who had left pediatric care were ill prepared for life beyond the protected care of their parents and the illness focused-services received from pediatric providers [20]. As providers we had made many unwarranted assumptions about AEA’s scope of services and supports needed to make the successful transition to adulthood including the transfer from pediatric to adult health care systems. Table 2 lists the lessons that we learned then and continue to learn now. Comments made by one of the adults with a childhood acquired condition resonated for the team the depth, diversity and range of HCT support needed to become a competent health care consumer and independent and productive member of the community: “Now that I’ve graduated from high school, what am I supposed to do? I wasn’t expected to live until now, so what do I do? I made no plans for my life after high school.”

Table 2
Lessons learned to improve the provision of health care transition services

It is a process and it is not linear.

Involves many moving parts.

Requires visuals and technology.

Assumptions are not warranted!

Constant review and re-instruction is needed.

AEA’s need for “saving face” is a reckoning force.

Needs for learning change.

Individualized approach is crucial.

Table 3

Self-disclosure strategies

1.	Begin discussion with parents of the rationale and importance of talking with their children about self-disclosure prior to entering school.
2.	The tension and circumstances associated with self-disclosure will need to be reviewed, including coaching when and to what extent self-disclosure is appropriate with parents, children and AEA.
3.	Advise parents to speak with their children about incidents wherein their child is teased/bullied about their disability and taunted to possibly self-disclose personal information and the appropriate response to contact school personnel.
4.	Provide an example of response their child may use if asked appropriately by a classmate with whom there is a relationship and in circumstances wherein the questions are inappropriate.
5.	Advise parents of the Family Educational Rights and Privacy Act of 1974 (FERPA) and Health Insurance Portability and Accountability Act (HIPPA) regulations regarding disclosure of private information.
6.	Provide developmentally appropriate coaching to children and AEA about their rights and protections regarding self-disclosure according to FERPA and HIPPA.
7.	Discuss with AEA self-disclosure circumstances in terms of timing and extent of information provided pertaining to dating and intimate relationships.
8.	Review with AEA and with their parents the American Disability Act rights and protections pertaining to self-disclosure in post-secondary, employment and community-based settings.

Table 4

Coaching/instruction for making agency referrals

1.	Identify and discuss the rationale for making referral to a particular agency.
2.	Obtain agreement/consent from AEA to provide contact information nearest to the AEA’s community of choice.
3.	Jointly access agency website to locate contact information and agency address.
4.	Provide anticipatory guidance about making a cold call to agency to inquire about program (i.e. phone tree).
5.	Review the list and sequence of questions to ask prior to making the call.
6.	Role playing may be useful prior to making call. Role playing is a useful strategy to rehearse possible responses to questions asked that they have not been asked before.
7.	Learn and practice how to use an agency telephone tree as well as comprehending the choices offered in order to make the correct choice. This can be done using a speaker phone in real time.
8.	May need to prompt AEA with selection and rationale for the choice.
9.	Once the choice is made and the youth may actually talk to an agency staffer or leaves a message.
10.	Conclude the call with having questions answered, appointment made.
11.	Follow up with the subsequent actions/outcome of the referral. Additional coaching and trouble-shooting may be necessary.

The focus group input helped our team to realize that instructing AEA with SHCN about the fundamental procedure tasks and knowledge with SHCN management was not enough. Living with a SHCN infuses the lived experience in every conceivable manner that was related ultimately to a comprehensive management of the SHCN that extended far beyond learning the generally accepted fundamentals of SHCN management. That realization lead us to develop an assessment tool, entitled the California Health and Ready to Work Health Care Transition Assessment Tool [26]. This tool consisted of 73 items with 14 subscales to assess the HCT transition needs of adolescents with special health care needs. We formulated assessment items that reflected the depth of their concerns and their application to daily living. For example, areas assessed related to supplies and durable medical equipment were asked pertaining sufficient electrical supports and backups in case of emergency; storage space for supplies and equipment including for college housing; housing modifications for wheelchairs that included access to bathrooms, doors, tubs with hand rails; and safe disposal/recycling of medical supplies.

Items relevant to emergency care needs were developed for lifestyle purposes that presupposed living as independently as possible. These questions included items pertaining to having the phone numbers of individuals to contact in case of emergency; access to a phone in emergency situations; contact phone numbers for paramedics; location/address of the closest hospital emergency department and urgent care in the community of their choice; special needs arrangements with the fire department in the event of evacuations; and arrangements with gas/electric companies for additional service needs.

Our team recognized as well that health care self-management began with the diagnosis of the SHCN, whether at birth or along the continuum of childhood and adolescence. This recognition spurred the development of instructional guidelines for teaching self-management to children (in this publication, the terminology of self-care is used) [27].

Our early partnership with an interagency coalition was pivotal in the development of a HCT model of care that was unlike other models of care reported in the literature. In contrast to HCT models of care developed within pediatric clinical settings, our work originated in the community with diverse transition and adult interagency partners (i.e. job development providers, Department of Rehabilitation counselors) which was then applied and modified to the Spina Bifida Program in the outpatient clinic at Children’s Hospital Los Angeles [13, 21, 28, 29]. The modification of this initial HCT service model in an outpatient setting created further opportunities for discovery for providing self-management support and services for AEA with spina bifida in our HCT program.

Our assessment process of self-management was extended to include the other areas of the AEA lifestyle impacted by their spina bifida diagnosis: education, employment, living arrangements, social/leisure/re- creational as the framework. This service model continues to incorporate this comprehensive approach to self-management.

4. Lifestyle self-management

Since those early years and up to now, our team continues to learn the complexities associated with ongoing assessment of self-management learning needs pertaining to the AEA with spina bifida lifestyles. Developmentally, the lifestyle needs are not narrowly focused on the tasks pertaining to condition-related maintenance, such as the fundamental SHCN tasks of bowel and bladder management, skin management and mobility. These lifestyle needs are generated from and intrinsically linked to the fundamental tasks and knowledge of managing the daily care of living with spina bifida. Living with spina bifida requires management skills and knowledge that extends beyond and influences functioning in other domains of life as evidenced by the HCTRC model. We can cite two examples that reveal the important lifestyle components of self-management that are essential to address and highly relevant to facilitating HCT planning and acquisition of developmental competencies needed for the transition to adulthood and transfer of care. These examples described below are self-disclosure and making referrals.

4.1 Self-disclosure

Disclosure of personal health information is of particular concern pertaining to social relationships, school and employment situations. Interestingly, this is a topic with limited evidence related to childhood SHCN as the literature is focused primarily on child abuse and neglect and living with HIV/AIDS [30]. Our team discovered that for many AEA, this was a social circumstance that had not been discussed by parents nor providers. Our discovery of this self-disclosure void became apparent when AEA with SB were asked their responses to queries about their disabilities given the visibility of their condition. Many cited inappropriate or intrusive questioning about their disability from their classmates. Their replies to their classmates’ questions were “I broke my leg”, “I was born this way” “My back is crooked” or to not respond at all. Since learning of this need for assistance, the issue of disclosure has been raised and discussed as it pertains to a myriad of lifestyle situations. Social circumstances are explored wherein youth are confronted to deal with disclosure matters in elementary, middle, and high school situations, and later in postsecondary, postsecondary and other community-based settings. Self-disclosure is a necessary and sometimes uncomfortable topic to discuss concerning dating and intimate relationships. Exploration of this issue enables discussion of strategies to employ in these circumstances as described more fully in Table 3.

Questions arise concerning the disclosure of their SHCN and needs for health-related accommodations for employment and college enrollment. As appropriate, the legal rights and protections pertaining to disclosure in academic and work situations are reviewed as these questions can and do arise. Youth are referred to legal and advocacy resources that can be of assistance as well.

4.2 Making referrals

We learned that making referrals is an unfolding process that requires coaching, surveillance, follow-up, and problem-solving. For many adolescents making a “cold call” independently to an agency is an intimidating experience as they have not had the previous experience of doing this. The complicated process of calling a service agency involves a number of steps to ensure the follow-up with the referral as depicted in Table 4. As the steps of the task depict, there are many components associated with referral follow-up, which include executive functioning, fine motors skills, communication, issues pertaining to self-disclosure, and multi-tasking. Providing an informational sheet for a referral to a transition and/or adult community-based resource is not likely to be sufficient. It became apparent that real-time assistance with managing calls can be a supportive learning experience for AEA who have had limited opportunities to actually call agencies by themselves.

As these examples illustrate, lifestyle self- management is essential and pivotal to facilitating the transfer of care and transition to adulthood. Lifestyle self-management is a critical and necessary component of health care self-management if the AEA is to achieve success with HCT as presented in this paper. Evidence is needed for the development of models to guide best practices to foster the acquisition of self-management skills to live a full and healthy life for AEA with SHCN, including AEA with spina bifida. The lessons our HCT team have learned, simply stated are listed in Table 2.

5. Conclusion

The presentation of the plenary session focused on self-management at the Spina Bifida 3 ${}^{\text{rd}}$ World Congress was intended to illustrate the complexities of care to address the self-management needs of AEA with spina bifida. Self-management competencies needed to live fully, productively, and independently extend beyond the fundamental procedural tasks associated with daily needs of individuals with spina bifida. Lifestyle self-management services that are closely aligned with the health-related needs of individuals with spina bifida need to be recognized as an essential instructional component of HCT service models. These complex care needs require the use of research designs that enable testing of complex interventions to generate the evidence needed to inform the use of effective service models and improved outcomes for AEA with spina bifida who transfer to adult care and transition to adulthood.

Footnotes

Conflict of interest

None to report.

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Self-management and health care transition: Trials,tribulations and triumphs

Abstract

PURPOSE:

METHOD:

RESULTS:

CONCLUSION:

Keywords

1. Introduction

Table 1 Consensus report six HCT service model recommendations [8]

Table 2 Lessons learned to improve the provision of health care transition services

4.1 Self-disclosure

4.2 Making referrals

5. Conclusion

Footnotes

Conflict of interest

References

Table 1
Consensus report six HCT service model recommendations [8]

Table 2
Lessons learned to improve the provision of health care transition services