Presentation Objectives

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2 Presentation Objectives Overview of self-management as it relates to transition Describe tools used to support patients and families Highlight strategies that can be used to promote/foster self-management, independence, and improve quality of life Transition protocol at CHW with implementation of EHR

3 Self-Management Self-management refers to the ability of the individual, in conjunction with family, community, and healthcare professionals, to manage symptoms, treatments, lifestyle changes, and psychosocial, cultural, and spiritual consequences of health conditions. (Richard and Shea, 2011 as cited in Schulman-Green et al, 2012). Optimal self-management requires strategies to maintain a satisfactory quality of life

4 Self-Management Strong self-management skills foster a patient s growth through the general stages of development and are imperative for a successful transition into adulthood and adult healthcare Transition programs across a variety of chronic health conditions have emphasized the development of self-management skills as an essential precursor of positive health outcomes and independence in living with a chronic condition (Betz et al, 2010 as cited in Risosh et al, 2011).

5 Self-Management The presence of a chronic condition adds another dimension to the already complex process of becoming an adult Many challenges and barriers which can be associated with transition to adult healthcare including, but not limited to: Physical functional status Developmental level Social development Emotional/behavioral development Socioeconomic status Resource availability and access

6 Transition According to the AAP and AAPF, The goal of transition in health care for young adults with special health needs is to maximize lifelong functioning and potential through the provision of high quality, developmentally appropriate health care services that continues uninterrupted as the individual moves from adolescence to adulthood.

7 What is successful transition? The goals of a successful transition are to optimize health and to facilitate each young person to attain his or her maximum potential (Rosen, 2003). It is the healthcare providers duty to empower self-efficacy, enlist support services and resources, and teach strategies to help the young adult attain self-fulfillment

8 What does successful transition require? Requires participation and diligent involvement of multiple disciplines to be effective Requires a lifespan approach Continuous process with constant guidance, advocacy, negotiation, and re-negotiation Requires commitment from the patient and parent(s)

9 Transition Young people need to develop an understanding of their health care needs and begin to take responsibility for their healthcare decisions as their cognitive and learning skills allow (Burke and Liptak, 2011) Transition planning should begin early in adolescence to facilitate successful outcomes

10 Tools/Strategies What strategies or tools are there for providers to support youth in developing skills to manage their own healthcare, enhance independence and improve quality of life? Stages of the Working Alliance Ecological Model of Secondary Conditions and Adaptation Theory of Inner Strength Medical Home

11 Stages of the Working Alliance Stage Professional Parent Child/Young Person 1 Leadresponsibility Participates and Provides care Receives care 2 Partner-gives guidance and support Full Partnerguides and manages Participates in care and decision making 3 Consultant Supervisorshared decision making Manager-shared decision making 4 Resource Consultant Lead-manages and supervises care

12 Stages 1-4 Stage 1 Provider initiates the working alliance and develops a plan based on shared goals Stage 2 Inform and empower patient and parents allowing child to function as a participant in their self-care and decision making Stage 3 Allow parental decision making and establish individual relationship with youth Stage 4 Facilitate lifespan development; act as support person for parent and youth

13 Adaptation and Inner Strength Study by Ridosh et al, 2011 focused on young people with spina bifida and their perspective on self-management and independence associated with transition Conducted interviews to gain a better understanding of how young adults develop effective self-management behaviors to facilitate their independence

14 Adaptation and Inner Strength Themes emerged from participants responses Struggling for independence Limiting social interactions and experience with stigma Building inner strength These themes influenced implications for interventions to improve selfmanagement of care

15 Interventions Promote early role negotiation Improve family and community communication patterns Create opportunities to practice independence Support employment opportunities Educate against labeling Foster peer relationships Foster connectedness

16 Integration of Strategies Implement interventions at specific stages in the healthcare alliance Stage 1 Promote early role negotiation Stage 2 Initiate and improve family and community patterns Create opportunities to practice independence Stage 3 Educate against labeling Foster peer relationships Stage 4 Support employment opportunities Foster Connectedness

17 Processes at CHW Transition care plan Personalized for each young adult Comprehensive summary of medical, socialemotional and developmental history Added to the Problem List Transition checklist Provides for ongoing assessment and teaching of self-management for the youth Transition team roles Primary care provider, specialist, APN, RN Social worker Transition coordinator

18 Procedure Best Practice alert All children with SHCN should have a transition care plan in their problem list by age 14 Will have for all children but focus on youth with complex chronic conditions Member of healthcare team designated as the transition coordinator

19 References AAP, AAFP, ACP-ASIM (2002). A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 110(6Pt 2), Burke, R.; Liptak, G.S. (2011). Providing a primary care medical home for children and youth with spina bifida. American Academy of Pediatrics. 128(6), Children s Hospital of Wisconsin (2012). Transition to adult health care polity and procedure. Ridosh, M; Braun, P.; Roux, G.; Bellin, M.; Sawin, K. (2011). Transition in young adults with spina bifida: a qualitative study. Child: Care, Health, and Development, 37(6), Schulman-Green, D.; Jaser, S.; and Martin, F. et al. (2012). Process of self management in chronic illness. Journal of Nursing Scholarship. (44)2, Wells, C; Reiss, J. Letting Grow and Letting Go: From Diagnosis to Adulthood. [Power Point Slides].

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