Providing Chronic Care Management

to Individuals and Family Members

Sharon A. Denham, PhD, RN, CNE

Professor, Houston J. & Florence A. Doswell Endowed Chair in Nursing for Teaching Excellence
Texas Woman's University, College of Nursing, Dallas Campus
 Course Objectives

Identify fallacies in thinking and clinical practice around chronic

disease self-management.

Describe family - focused care approaches to effectively manage

chronic illness.

Discuss ways family routines and collaboration is used form a chronic disease
self-management plan.
U.S. total health care spending = $4.8 trillion (2021)
$2.6 trillion in 2010
$75 billion in 1970

Health care spending accounts for nearly 20% of

gross domestic product (GDP) or 1/5 of the U.S.
economy.

Centers for Medicare and Medicaid Services, National Health Expenditures Projections (2011-2021)
What is Health Care?

Services offered by the medical and

allied health professions.

• Prevention, treatment, management of illness and disease.

• Preservation & management of mental and physical health and

well-being.
 What is Family Health?

• Family health is a dynamic and complex construct —- It involves

multiple member interactions within and across the boundaries of households ne

• Family health is influenced by the participants’ embedded cultural context

and characterized by highly interactive functional and structural perspectives.

• Family members used communication, cooperation, and caregiving to develop

 Evidence-Based Care
• Requires a systematic review of published research and reco

• Involves expert opinions

• Often uses clinical guidelines/protocols

 Ethics of Health Care
• Risks
• Benefits
• Alternatives

• In last treatment, the physician discussed alternative treatment

options along with traditional ones (39%).

• Only 65% of physicians report using evidence-based guidelines

Nielsen’s Strategic Health Perspectives - March, 2016

30,007 U.S. Consumer Respondents
 Prevention Disparities
Providers Consumers
Recommend persons increase
Increase physical activity (22%)
physical activity (90%)

Recommend better eating habits Adopt better eating habits (19%)

(90%)
Remind about preventive
Remind about preventive screenings (14%)
screenings (89%)
Enroll in weight loss program
Recommend enroll in weight loss
(5%)
program (52%)

Use mobile app to track physical Use mobile app to track physical
activity levels (52%) activity levels (5%)

Recommend use of a wearable heart Use a wearable heart monitor to

monitor to track activity (40%)
track activity (4%)

Nielsen’s Strategic Health Perspectives - March, 2016

30,007 U.S. Consumer Respondents
 Conclusions Drawn
To be accountable —— We need new ways to define quality care

Need stronger clinical education & follow-up

Prevention & chronic care coordination must be priorities

Need to improve 24/7 access - Effective counseling, education, &

preventive care

Need better use of technologies - Assist people to learn to use them

Behavior Change
Chronic Illness
 Chronic Illness
• Symptoms change over time

• As symptoms change —— Challenges & needs change

• Over time individuals & families face life changes

• Care is co-produced within the family household

• Families differ in their needs

 Family-Linked Concepts
• Family Identity

• Family Stress

• Family Coping

• Family Resources

• Family Organization

• Family Development - Life Course

• Family Communication

• Family Supports
Living with Chronic Illness
 Chronic Illness
• Who really manages chronic illness?

• Individuals/families need information, care, support,

coaches, guides, resources

• Community support needed by those with chronic illness

• Solutions that are “high touch” and “high tech”

Medical Model
 Complexity of
Chronic Disease Management

Household Niche
$$$
Motivation
Resources
Routines

Interactions

Personal Traits
Community
Societal Circumstances

Values
Social Networks
Chronic Disease Self-Management

Involve family and friends —- Social determinants of health

Rethink education/information needs
Create meaningful measurable action plans
Excellent communication skills - Hear patient stories
Interdisciplinary care coordination
Resources
 Family - Focused Care

Care that occurs through relationships among

health care professionals, individuals, families, and
communities….

RRRR
• Relationship based
• Respect individuals
• Respond to individual and family as a unit of care
• Recognize family roles and empower them
Ecological Model
(Bronfenbrenner, 1976)
www.diabetesfamily.net/family/family-health-model/
Family Context
Family Function
Family Health Routines
(Structure)
Individual Disease - Family Choices
 Family Health Routines
• Self-care (usual ADL)

• Safety and prevention (health protection, unintended injuries)

• Mental health behaviors (Valued & meaningful personal life)

• Family care (traditions, celebrations, shared times)

• Illness care (response choices to medical directives)

• Member caregiving (caring for one another)

Secret of Success is about Daily Routines
Families
Failures in Chronic Disease Self-Management
• Fail to see the family as the unit of care

• Assumptions about care needs

• Inadequate goal setting & adequate planning

• Inadequate or inappropriate instruction & education

• Fail to identify the complexity of care needs

 Family Care

• Family-focused care across the life-course is not central

to medical care

• Adult families need care similar to child - centered care

• Family care has potential for health - promoting effects

 Clinical Roles
Think Family - Not merely individual focused
Communication skills — Respect values
Assessment (context, function, routines) — What
needs attention?
Identify desired care outcomes (rationale)
Address complications & prevention
Consider other team member involvement
 Family Routines
• Adaptation or change of usual behaviors

• Create new routines (seldom easy) - May interrupt traditional

family behaviors

• Who else is or might be involved?

• Requires valuing change & a commitment

• Reconstruct family health routines

• Caregiver stress

• Living with uncertainty

• Creating a new normal

 Identify the Evidence
• Family research studies

• Nursing/Clinical issues

• How do we better manage chronic illness?