The document discusses several key aspects of family decision making when a family member has a chronic medical condition or disability: 1) Families struggle with decisions around futility of medical interventions and coming to terms with an uncertain or poor prognosis. 2) Caring for a child with special needs can greatly impact the entire family through increased stress, changes to family identity and relationships, and financial strain from medical costs. 3) Counselors can help families build resiliency by using techniques like empathy, reframing challenges in a positive light, encouraging positive self-talk, and teaching skills for effective coping.

1. Family Issues & Disability Tuesday, October 28, 2008 Psychological Aspects of Disabilities – SPED62 Instructor: Russell W. Wong, MA

2. Family Decision Making Process Futility: Futility is realized when despite medical interventions there is no hope for survival. There is a need for doctors be as open and direct as possible. Coming to Terms: Family members felt better about decisions if they were convinced of futility. Uncertain prognosis contributed to prolonging decision making and causing family distress and anguish. Shouldering the surrogate role: The family’s understanding of the patient’s quality of life and the importance of the patient’s wishes is critical in relieving the family’s anxiety in assuming the responsibility. Facing the Question: Readiness of patient or family to make a decision. Note: Key Factors in the Family Decision Making Process are the patient prognosis & patient wishes.

3. Children with Chronic Medical Conditions Family Impact: The stress created by caring for a special needs child can affect relationships with other children in the family and affect the marriage. The amount of family stress is related to the amount of outside support available. The family identity is defined by the special needs child. The family’s financial well being, social networking and self identity can be negatively affected. The family earnings decrease as the medical costs increase due to caregiving for the child. There is a greater appreciation for life and there is more sensitivity to tolerate individual differences. Goal is to promote family resiliency.

4. Counseling Techniques & Interventions Counselor’s Role: Counselor needs to have empathy and be genuine and caring. Focus is on the person not the limitation. We all have unique challenges & gifts Helping individuals to learn the mental and emotional skills necessary to deal effectively life. Reframing: This is a technique for learning another way of seeing a situation. Getting rid of problems is an ineffective approach to life challenges. Shifting attitudes to a positive outlook is key to successful coping. Accepting personal responsibility for feelings and actions. Consciously making constructive choices rather than reacting with resentment, disappointment, irritation, or anger. Exploring choices is part of the healing process. Teaching oneself forgiveness and caring for oneself. Positive Self Talk What we tell ourselves has a tremendous effect on our psyche and our physical well being. Many people have a critical inner dialogue. Choose to re-direct internal dialogues to positive thoughts.

5. Family Case Study - Exercise Family Case Study: Objective: Apply the concepts Develop a Case Study Profile of a Family learning to cope with a child who has a chronic medical condition (specific condition to be assigned). Instructions: Break out into groups of five. Research the Chronic Illness & Associated Resources (Access Lab) – 45 minutes Assign a Facilitator, Presenter & Assign a Scribe In your case profile include the following information: the specific chronic illness, age of the child, financial situation of the family, and any other case history information that you deem important to include. Describe the impact on the Family Unit including: Describe the Life-Extending Treatment Options that are available; Provide details on how the family made their decisions; Describe how they manage the caregiving responsibilities; Describe how they maintains social life and self identity; Describe their financial status, emotional well being and daily activities. Be sure to include decisional factors such as prognosis, preferences and quality of life issues. Outcome: Summarize Group Findings on Board. Presentation of Discussion – 5 minutes

6. Family Case Study - Assignment Family Case Assignment: Objective: Apply the concepts Develop a Case Study Profile of a Family learning to cope with a family member who has a chronic medical condition. Instructions: In your case profile include the following information: the specific chronic illness, age of the child, financial situation of the family, and any other case history information that you deem important to include. Describe the impact on the Family Unit including: Describe the Life-Extending Treatment Options that are available; Provide details on how the family made their decisions; Describe how they manage the caregiving responsibilities; Describe how they maintains social life and self identity; Describe their financial status, emotional well being and daily activities. Be sure to include decisional factors such as prognosis, preferences and quality of life issues. Outcome: Submit a 2-3 page Case Study Paper, double spaced and typed in 12 font. Due date: Tuesday, November 4, 2008