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Health Care and The Child with Health Issues: A Parents Perspective. With Lisa C. Greene, MA CFLE. Our Busy American Life. Family Resources Human Economic Environmental Social. Moore and Asay (2008). A Day in Our Life…. Daily Life with Chronic Illness…. The Balancing Act.
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Health Care and The Child with Health Issues: A Parents Perspective With Lisa C. Greene, MA CFLE
Our Busy American Life • Family Resources • Human • Economic • Environmental • Social Moore and Asay (2008)
The Balancing Act Quality of Life Burden of Care
What is Quality of Life • World Health Organization: An individual’s perception of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns. • Medical Quality of Life: The patient's ability to enjoy normal life activities.
Quality of Life Scale • Physical and Material Wellbeing • Relations with Other People • Social, Community and Civic Activities • Personal Development and Fulfillment • Recreation • Independence Human Economic Environmental Social Flanagan Quality of Life Scale
How Can Respiratory Therapists Help improve patients’ quality of life and burden of care?
Physical & Material Wellbeing • Material well-being and financial security • Health and personal safety Flanagan Quality of Life Scale
How can you help? Material well-being and financial security • Listen and show empathy • Provide suggestions for co-pay programs • Know where to direct patients who express a need (social workers, 211 for OR & WA) Health and personal safety • Continuous improvement in your field • Seek out advances in research • Share evidence-based information, not opinions
Relations with other people • Relations with parents, siblings, other relatives • Having and raising children • Relations with spouse or significant other • Relations with friends • Relations with medical team • Creating patient-family-provider alliances • Developing collaborative relationships with professionals Flanagan Quality of Life Scale
How can you help? • Promote a positive, team spirit • Use and model good communication skills
Hearing Listening What is listening? Hearing: passive and automatic (Shore, Listen to Succeed, 2012) Listening: active and intentional Involves Three Functions: • Hearing • Processing the message • Reacting through words or body language
Body language • Tone of voice • Timing is important • Culture matters UNSPOKEN MESSAGES The way we “come through” can be more important than the words we say. • The way the words are said • Facial expression (Mehrabian & Ferris)
How to be a Good Listener • Be present • No judgment • Acknowledge the speaker • Wait for the end of the speaker’s sentence before formulating a reply • Reflect back what you hear • Don’t jump right in to problem-solving or advice (Shore, Listen to Succeed, 2012; Gottman & Gottman, How to Be a Great Listener, 2012)
PRACTICING THE FINE ART OF NEGOTIATION VS. Negotiation is when two groups who disagree work together to solve a problem.
SHARING CONTROL We either share control or the other person takes it! Cline & Greene, Parenting Children with Health Issues
QUESTIONS IMPLY CHOICES • Replace statements with questions • Questions put you in the role of a supportive coach • Empowers patients to think for themselves • Encourages collaborative problem solving • Fosters independence (doing for oneself) • Implies: “You’re competent. I trust you.” Examples: • I’m wondering about ….? • What are your choices here? • What is your plan for ….? Note: Try not to use “Why” or “Yes/No” questions
22 Leading with style What style are you? Charles F. Boyd, Different Children, Different Needs Everett Robertson, Why Aren’t You More Like Me? 22
23 What Style Are You? Faster-paced Outgoing Initiating Takes Risks Makes Quick Decisions Competing Assertive Broad Focus Talks / Tells Reflective Responding Avoids Risks Thinks Through Decisions Cooperating Slower Paced Specific Focus Listens / Asks Slower-paced Charles F. Boyd, Different Children, Different Needs
24 What Style Are You? Task-oriented People-oriented Independent Guarded In Relationships Cool Controlled Calculating Time-conscious Fact-oriented Impatient Relational Relaxed Warm Supporting Feeling Flexible about Time Opinion-oriented Easy-going Charles F. Boyd, Different Children, Different Needs
25 What Style Are You? Faster-paced D I I Task-oriented People-oriented C S Slower-paced Charles F. Boyd, Different Children, Different Needs
26 Different People, Different Styles Faster-paced Influencer Dominant D I Candid & Honest Confident Bottom-line Outgoing Animated Fun-loving Task-oriented People-oriented Steady Conscientious S C Careful & Reserved AnalyticalDetail-oriented Calm & Patient Helpful Friendly Slower-paced CONNECTION INFORMATION Everett Robertson, Why Aren’t You More Like Me?
Reflection… Sometimes we need to look backwards in order to move forward…
balancing qol with boc • Relationships: Learn good communication and parenting skills. • Stress Management: Meditation, affirmations, and gratitude. • Money Management: Know wants vs. needs, budget, & plan. • Organization: Do it, delegate it or dump it. Scrub your space. • Information: Turn down the noise. Need to know vs. want to know. • Have fun regularly, enjoy life. • Find meaning and purpose. • Learn to let go. Trust. Faith. • Good self care. • Get support. BoC QoL
THERE IS GREAT HOPE FOR THE FUTURE… Elizabeth Nash Liz at 2002 Olympics • Emphasize medical progress • The future for all is unknown • Use statistics to motivate good self-care • Stay in the present • Live with purpose and passion • Focus on the positive
What Is Your Legacy? “Hope sees the invisible, feels the intangible, and achieves the impossible.”
Connect with me Email: lisa.greene@pcwhi.com Websites: www.pcwhi.com www.HappyHeartFamilies.com
References • Bluebond-Langner, M. (1996). In the shadow of illness: Parents and siblings of the chronically ill child. Princeton University Press. • Boyd, C. F. (2004). Different children, different needs: Understanding the unique personality of your child. Multnomah Pub. • Campbell, T.L. (2003). The effectiveness of family interventions for physical disorders. Journal of Marital and Family Therapy, 29 (2), 263. • Christophersen, E., & VanScoyoc, S. M. (2010). Take as directed: Improving adherence in the primary care or specialist care setting. Development and Behavior News. • Cline, F. W., & Greene, L. C. (2007). Parenting children with health issues.Love and Logic, Golden, CO. • Gottman & Gottman (2012), How to Be a Great Listener. The Gottman Institute. • Holt‐Lunstad, J., & Smith, T. B. (2012). Social relationships and mortality.Social and Personality Psychology Compass, 6(1), 41-53. • Kieckhefer, G.M. & Trahms, C. (2000). Supporting development of children with chronic conditions: From compliance toward shared management. Pediatric Nursing, 26, 4, 354-363. • Mehrabian, A., & Ferris, S. R. (1967). Inference of attitudes from nonverbal communication in two channels. Journal of consulting psychology, 31(3), 248. • Moore, T. J., & Asay, S. M. (2008). Family resource management. Sage. • Patterson, J. M., & Geber, G. (1991). Preventing mental health problems in children with chronic illness or disability. Children's Health Care, 20(3), 150-161. • Patterson, J. M. (1991). Family resilience to the challenge of a child's disability. Pediatric annals, 20(9), 491. • Shore, L. (2012). Listen to Succeed. CreateSpace Independent Publishing Platform. • Walsh, F. (2006). Strengthening family resilience. Guilford Publication. • Weihs, K., Fisher, L., & Baird, M. (2002). Families, health, and behavior: A section of the commissioned report by the Committee on Health and Behavior: Research, Practice, and Policy Division of Neuroscience and Behavioral Health and Division of Health Promotion and Disease Prevention Institute of Medicine, National Academy of Sciences. Families, Systems, & Health, 20(1), 7. • Wray, J., Lee, K., Dearmun, N., & Franck, L. (2011). Parental anxiety and stress during children’s hospitalisation: The Stay Close study. Journal of Child Health Care, 15(3), 163-174.
Health Care and The Child with Health Issues: A Parents Perspective With Lisa C. Greene, MA CFLE