Presentation Objectives

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

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

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).

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

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”.

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

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)

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

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

Stages of the Working Alliance

Stage Professional Parent Child/Young Person 1 Lead-responsibility Participates and Provides care Receives care 2 Partner-gives guidance and support Full Partner-guides and manages Participates in care and decision making 3 Consultant Supervisor-shared decision making Manager-shared decision making 4 Resource Consultant Lead-manages

and supervises care

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

Adaptation and Inner Strength

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

Adaptation and Inner Strength

responses

 Struggling for independence

 Limiting social interactions and experience with stigma

 Building inner strength

 These themes influenced implications for interventions to improve

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

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

Processes at CHW

 Transition care plan

 Personalized for each young adult

 Comprehensive summary of medical, social-emotional 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

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

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), 1304-1306.

 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), 1645-1657

 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), 866-867-874.

 Schulman-Green, D.; Jaser, S.; and Martin, F. et al. (2012). Process of self management in chronic illness. Journal of

Nursing Scholarship. (44)2, 136-144.

 Wells, C; Reiss, J. Letting Grow and Letting Go: From Diagnosis to Adulthood. [Power Point Slides].