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Behavioral /Psychosocial Task Force. Barbara Anderson, Ph.D. Belinda (‘Lindy’) Childs, ARNP, MN, CDE, BC-AD Edward Ehlinger, MD, MSPH Marissa Hitchcock, BS, RN. Objectives of Task Force Presentation. Normal developmental tasks in the post-high school period

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behavioral psychosocial task force

Behavioral /Psychosocial Task Force

Barbara Anderson, Ph.D.

Belinda (‘Lindy’) Childs, ARNP, MN, CDE, BC-AD

Edward Ehlinger, MD, MSPH

Marissa Hitchcock, BS, RN

objectives of task force presentation
Objectives of Task Force Presentation
  • Normal developmental tasks in the post-high school period

A. New theories of post-HS period of development (BA)

B. Changes in sources of support (MH)

C. Tasks faced by parents during post-HS period; how

parents help/hinder development during this period

(LC)

D. Health insurance; risk-taking behavior & mental

Health issues ; infrastructures supporting youth (EE)

objectives of task force presentation 2
Objectives of Task Force Presentation-2
  • Additional Psychsoc / Beh tasks faced by post H.S. youth with T1D

A. Health insurance challenges; Preconception care for

transitioning women with T1D (EE)

B. Feelings of abandonment when leaving ped. for adult DM

care (MH)

C. Challenges facing parents of youth with T1D; assessing

parental support transitioning youth with T1D (LC)

D. Mental health challenges: Depression; Eating Dis (BA)

III. Gaps and next steps in behavioral and psychosocial research

part i contemporary theory of development post high school
Part I: Contemporary Theory of Development post-High School
  • Jeffrey Arnett’s (2000, 2004) theory of the post-high school period as “Emerging Adulthood”
  • Based on data documenting

1. changing demographics of the post-high-school age person

2. interviews & questionnaire data from groups of 18-30-yr-olds, heterogeneous as to cultural, socio-economic, educational, and geographic characteristics

older developmental theories of the post high school period
Older Developmental Theories of the Post-High School Period
  • Older theories of the post-high school period based on sociological definitions of the “transition to adulthood” as:
    • 1. finishing education
    • 2. entering full-time work
    • 3. marriage
    • 4. parenthood
  • Example of older theory based on above defn:
    • E. Erikson’s (1950) post high school period = ‘young adulthood”.
changing demographics
21 yr. old in 1970

Married

Is a Parent or Expecting

Education completed

Settled into long-term job

21 yr. old in 2004

Not married- late 20’s

No children- late 20’s -early 30’s

Education on-going

Job & living changes

Changing Demographics
emerging adulthood
Emerging Adulthood
  • Distinct developmental period post-high school, from late teen’s to late 20’s:

1. Multiple transitions- geographically, economically, emotionally (away from parental home).

2. Many changes, distractions, & competing scholastic, economic, and social demands.

5 main features of emerging adulthood
5 main features of ‘emerging adulthood’

5 characteristics peak in the first half of the ‘emerging adulthood’ period and gradually stabilize:

1. Identity explorations (trying out various possibilities, esp. in love & work),

2. Instability (multiple relationships, highly mobile, revising ‘the Plan’),

5 main features of emerging adulthood1
5 main features of ‘emerging adulthood’

3. Self-focused Age (normal, healthy, & temporary)

4. Age of Feeling in-between (in transition, neither adolescent nor adult),

5. Age of Possibilities.

summary characteristics of emerging adulthood period of development
Summary:Characteristics of ‘Emerging Adulthood Period of Development
  • Post-high school period presents unique demands from adolescence and has fewer supports.
  • Family roles (for parents, teen, siblings) change dramatically when teen moves out of home.

3. Mental health problems peak in adolescence and for a subgroup there is continuity between the problems in mental health over the adol.- to post-adol. years (Millstein & Litt, 2001).

slide15

“After a while, it’s like I got out of high school- I started to fall apart with my diabetes. Like not taking care of myself. I wanted to be like everybody else. You know-hang out, go here, go there. You know? And not think about diabetes” (Gee, L., et al, 2007, p.322)

“It was just that I wanted to do it on my own. And then you know, it just kept going downwards” (Gee, L., et al, 2007, p.323)

changes in sources of support
Changes in sources of support
  • Social support is one of the key elements in determining patient compliance to treatment (Gee, L., et al, 2007)
  • Family still main source of support (Gee, L., et al, 2007)
  • One patient describes a team player friend that may attend education classes(Gee, L., et al, 2007)
  • Chat friends or camp friends with diabetes (Gee, L., et al, 2007)
  • Spirituality has inverse relationship with A1C value (Parsian, N., & Dunning, T., 2009)
what can we do
What can we do?
  • Maintain open door policy and allow parents or friends to attend patients’ appointments such as Bishop Auckland (Owen, P. & Beskine, D.,2008). Adolescent patients in study 2009 UK felt adult staff provides care without necessary support (Baines, JM, 2008).
  • Study UK (Owen, P. & Beskine, D.,2008) clinic contacts adolescents who miss appointments via text message until they respond to ensure care is received
  • James Cook University had goodbye and hello social events at young adult clinic to allow meeting peers who have gone through transition (Owen, P. & Beskine, D.,2008)
what can we do1
What can we do?
  • Use social media to facilitate connections (Sparud-Lundin, et al., 2009)
  • Openly discuss spirituality and its role in coping with life and living with diabetes (Parsian, N., & Dunning, T., 2009)
  • Flexible approach to care in Newport, UK adolescent clinic (ages 12-17) allowed patients to see each diabetes team member alone and then have parents come in at final team consultation (Parfitt, G., 2008)
parental tasks post high school
Parental Tasks Post-High School
  • Identification of Resources
    • Health Care including supplies
    • Emotional Support away from home
  • Navigating the Health Care System
  • Financial
  • Parental Support with fostering of independence and problem solving
college student demographics health insurance coverage risk behaviors source of health care

College Student DemographicsHealth Insurance CoverageRisk BehaviorsSource of Health Care

Edward P. Ehlinger, MD, MSPH

Director and Chief Health Officer

Boynton Health Service

University of Minnesota

March 27, 2010

education and labor market status of young adults
Education and Labor Market Status of Young Adults

Percentage of young adults

College Enrollment Hits All-Time High http://pewsocialtrends.orgOCTOBER 29, 2009

percentage of 18 24 year olds enrolled in college
Percentage of 18-24 Year Olds Enrolled in College

National Center for Education Statistics and U.S. Census Bureau American Community Survey

percentage uninsured in us by age
Percentage Uninsured in US by Age

Gallup – Healthways Well-Being Index June 29, 2009 Gallup Poll

where college students receive care for routine medical care
Where College Students Receive Care for Routine Medical Care

2010 Minnesota College Student Health Survey – Boynton Health Service, University of Minnesota

where college students receive care for mental health issues
Where College Students Receive Care for Mental Health Issues

2010 Minnesota College Student Health Survey – Boynton Health Service, University of Minnesota

u s birth rates by age 2005 number of births 1 000 women in specific age range
U.S. Birth Rates by Age – 2005(Number of births/1,000 women in specific age range)

* = fertility rate (# of births to all women/1,000 women age 15-44)

U.S. Census Bureau & BHS SHS

abandonment
Abandonment
  • According to Frank as quoted in (Fleming, E., et al., 2002), “A sense of loss may be felt when they move from a trusted and known relationship to a new service”
  • (Fleming, E., et al., 2002) also cites from Viner (1999), adolescents and parents may view transition as a step closer to complications or death.
  • “Adolescents feel adult staff treat them like adults and expect them to take responsibility for own care without providing necessary support,” (Baines, JM, 2008).
what can we do2
What can we do?
  • According to Parfitt, having appointment with pediatric and adult consultants to hand over the important issues and collaborate for optimal care (Parfitt, G., 2008)
  • Teach coping and spirituality to help with managing the disease (Parsian, N., & Dunning, T., 2009)
  • Help with the parents anxiety because it has been shown to impede the transition phase (Fleming, E., et al., 2002)
what can we do3
What can we do?
  • Provide support that is needed in this challenging time (Baines, JM, 2008)
  • Have a young adult clinic and have hello/goodbye social events (Owen, P. & Beskine, D.,2008)
  • Involve parents/family members because they are still the most trusted support group used by young adults (Owen, P. & Beskine, D.,2008)
slide37
GAPS!
  • Changing of values of young adults and how it applies to self management
  • Online support groups: do they work, are they used?
  • Support from the diabetes team: what do they want from us? Will it improve outcomes?
  • How do they want to learn how to take care of themselves? Online classes, group classes, individual, telemedicine, combination? What works best?
challenges of being a parent of a young adult with diabetes
Challenges of Being A Parent of a Young Adult with Diabetes
  • Fear, Anxiety, and Worry
  • Letting go
  • Fostering independence
key considerations related to parental tasks
Key Considerations related to Parental Tasks
  • Individual & Family Assessment Critical
    • Differences between functional and non-functional families
    • Differences between young adults with diabetes
  • Legal implications
    • HIPPA guidelines
next steps related to parents
Next steps related to parents
  • Need studies that examine how parents adjust to children leaving home
  • Need studies identifying strategies to help parents foster independence
part ii mental health challenges facing post h s youth with t1d
Part II: Mental health challenges facing post-H.S. youth with T1D
  • Depression
  • Eating disorders and disordered eating
  • “Diabetes Burnout”
recent empirical studies depression
Recent empirical studies- Depression
  • Bryden et al. (1999, 2001) –UK. longitudinal

-subgroup with psych. & beh. problems in adolescence worsened in next 8 years, esp. depression & disordered eating ( risk of microvascular complications & death)

  • Grey et al (2007) – T1 adol. on intensive treatment with high levels of depressive Sx tend to continue to have high depressive Sx into young adulthood.
recent empirical studies eating disorders and disordered eating
Recent empirical studies-Eating disorders and disordered eating
  • Rydall et al (1997)- Canada, longitudinal adol females with disordered eating at higher risk for complications in their 20’s and worsening of eating disorder without intervention.
  • Goebel-Fabbri (2009) T1D associated with eating disorder risk factors (higher BMI, low self-esteem, depression, dietary restraint).
  • Tierney et al (2009) Diabetes clinicians not trained to identify eating disturbances or insulin manipulation in patients.
summary empirical data on youth with t1d 16 26 yrs
Summary: Empirical data on youth with T1D 16-26 yrs

1. Psychosocial maturation similar to controls (Pacaud et al, 2007).

2. Parents continue to provide impt. Supports

(Gillibrand et al, 2006).

3. Sub-group with psych. problems during adol (depression, eating disorders) worsens post adolescent-period,  adherence,  control, risk for complications (Bryden et al, 1999, 2001)

4. Very few studies of U.S. cohorts or evaluations of U.S. models of transition care (Wolpert et al, 2009)

iv evidence for clinical challenges in emerging adulthood for youth with t1d
IV. Evidence for Clinical Challenges in ‘Emerging Adulthood’ for Youth with T1D

1. Mental health problems continue

2. Drastic changes in support systems for self-mgt.

3. Loss to medical & mental health follow-up care

4.  options for health insurance

burn out
“Burn-Out”

“A common response to a chronically difficult and frustrating job, where the individual works harder and harder each day and yet has little sense that these actions are making a real difference. “

psychol symptoms of diabetes burn out
Psychol. Symptoms of “Diabetes Burn-Out”
  • Feeling chronically over-extended and depleted by the burdens of living with and managing DM.
  • Feeling a sense of inadequacy, or guilt that I am failing at this job of managing DM.
  • Feeling helpless and hopeless, acting irritable and hostile with family and providers.
  • Often mistaken as “denial”.

(Polonsky 2002).

slide50

Sample Session #6Diabetes Burnout

(Laffel et al,2003)

  • Diabetes burn-out is preventable.
  •  Watch for the early signs of burnout and find ways to help relieve the stress.

 Talk about your negative feelings about diabetes.

 Set realistic goals with your health care team.

  • Think of ways that your family and friends can help ease

the burden of diabetes.

 Make changes in your diabetes care one small step at a time.

 Diabetes is not about “passing” or “failing.”NO ONE can successfully manage diabetes all alone

summary
Summary
  • “Diabetes Burnout” is common and puts patients at risk for poor control, complications, and poor Quality of life (Polonsky 2002).
  • Diabetes care is 99% self care, requiring vigilance & motivation, 24 hr./day with no days off, no vacations.
  • Clinicians can try to prevent and intervene in DM Burnout using the 4 R guidelines:

Realistic goals

Reduce negativity

Reach for progress, not perfection

Recognize & validate frustrations of caring for DM

gaps in research
Gaps in research
  • Needs assessment of post-high school youth and parents; peds and adult dm clinicians
  • Family-focused, longitudinal interventions
  • Strategies for building a career and taking care of dm
  • Detection and treatment of depression, eating disorders, and ‘diabetes burnout’ in transition period
  • Effective anticipatory guidance for parents and youth about preparing for transition—when and how to begin?
  • Optimal models of transition care in U.S.
works cited
Works Cited
  • Baines, JM (2009) Promoting better care: transition from child to adult services. Nursing

Standard. 23, 19, 35-40.

  • Fleming, E., Carter, B., Gillibrand, W. (2002) The transition of adolescents with diabetes from

the children’s health care service into the adult health care service: a review of the literature. Journal of Clinical Nursing. 11, 560-567.

  • Gee, L., Smith, T., Solomon, M., Quinn, M., & Lipton, R. (2007) The Clinical, Psychosocial and

Socioeconomic Concerns of Urban Youth Living With Diabetes. Public Health Nursing. 24, 4, 318-328.

  • Owen, P. & Beskine, D. (2008) Factors affecting transition of young people with diabetes. Paediatric Nursing. 20, 7, 33-38.
  • Parfitt, G. (2008) Improving the young person’s experience of transition: lessons from Wales. Paediatric Nursing. 20, 9, 27-30.
  • Parsian, N. & Dunning, T. (2009) Spirituality and coping in young adults with diabetes: a cross- seciontal study. European Diabetes Nursing. 6, 3, 100-104.
  • Sparud-Lundin, C., Öhrn, I., & Danielson, E. (2009) Redefining relationships and identity in young adults with type 1 diabetes. Journal of Advanced Nursing. 66, 1, 128-138.