1. Chapter 37 Caring and Coping: Helping the Family of a Child with a Disability
Overview
Impact of developmental disability on family functioning
Strategies and resources for families
Principles of family-centered care
Influence of societal attitudes
Chapter 37 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved.

2. Understanding Family Systems
Families
Exist within broader network of communities and social networks
Possess strengths and resiliency for guiding their own life course and grappling with child rearing issues, regardless of the type and degree of their child’s disability
Bronfenbrenner’s ecological systems model
Interactive nature of family existence
Microsystem, mesosystem, exosystem, macrosystem
Family system: dynamic; transmits traditions, values, ethnic heritage, spiritual beliefs
Chapter 37 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved.

3. How Families Cope with the Diagnosis
Responses differ widely and depend on
Severity of child’s disability
Preparedness
Prior knowledge of the disability and beliefs about why the child may have it
Experience interacting with an individual with similar disability
Health care professional’s manner of delivery of the news
Other factors influencing response:
Timing, words used, and emotional support professionals provide
Beliefs about individuals with disabilities; knowledge of treatments; receptiveness to accepting help from professionals, friends, and other family members
Chapter 37 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved.

4. How Families Cope with the Diagnosis (continued)
Parental responses: unique, personal, often embedded in distress; initially, often combination of shock, denial, guilt, overwhelming sense of loss
Intellectual stresses
Must integrate vast amounts of information about physiology, timing and type of treatments, rationale for treatment approaches, and potential adverse effects and their management
Instrumental stresses
Financing, dealing with insurance policies, managing division of labor for providing for a child with special needs while accomplishing other family responsibilities
Chapter 37 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved.

5. How Families Cope with the Diagnosis (continued)
Emotional stresses
Uncertainty regarding diagnosis and prognosis; children’s ongoing manifestation of severe behavior problems; can place parents at risk for posttraumatic stress disorder
Family-centered care approach: partnering with families involves educating them about their child’s condition, making them aware of resources and entitlements available, and helping them examine different treatment choices
Parental depression:
Emotional stress with physical strain/exhaustion of care responsibilities
Women tend to be more at risk; parental depression may also be accompanied by anger
Cognitive behavior therapy and interpersonal therapy
Chapter 37 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved.

6. Long-Term Effects on the Parents
Family coping
Most parents able to cope, recognize positive outcomes; increased cohesion and compassion among family members
Parenting networks are often powerful supports
Services benefit families when delivered in a family-centered manner and address parent-identified and prioritized issues
Must assess family strengths and needs to determine level of assistance
Chapter 37 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved.

7. Long-Term Effects on the Parents (continued)
Reframing and normalizing are important intervention strategies for coping
Reframing: reinterpreting a behavior or its context by viewing it from a different lens-frame and focusing on the adaptive and positive aspects
Normalizing: communicating that the emotions and struggles experienced are both normal and expected
Chapter 37 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved.

8. Effects on Siblings
Have unique needs/concerns, vary with gender, age, birth order, and temperament
Have mixed feelings about their siblings
Many choose to enter helping professions
Fare best psychologically when
Parents’ relationship is stable
Feelings discussed openly
Disability explained completely
Not overburdened with child care responsibilities
Chapter 37 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved.

9. Effects on the Extended Family
Grandparents can harbor guilt, assign blame, or even reject the child
The quality of the relationship grandparents have with their own children affects their acceptance of the grandchild’s disability
Some grandparents may experience denial more strongly than do the parents
Grandparents can be a strong source of support: respite care, help with chores, and financial assistance
Other extended family also can help or hinder the parents’ ability to cope
Chapter 37 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved.

10. Effects on the Child with a Disability
Preschool age:
Child may not recognize he/she is different
Play serves as early learning experience
Individualized family service plan set up for children in early intervention, individualized education program after
School age:
Most children aware of their abilities and challenges
May need help dealing with feelings of being different
Full acceptance must first come from home via participation in family activities
Inclusion with appropriate adaptations or assistance
Programs such as Special Olympics or camps for children who have varied abilities
Chapter 37 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved.

11. Effects on the Child with a Disability (continued)
Adolescence:
Elicits fears about independence, self-sufficiency, maturity
Desire for peer approval in areas of physical and intellectual development may need to be adjusted because of limitations posed by the developmental disability
Differences less of an issue if adolescent with a disability has
At least one supportive friend
Peer group with diverse members
Parents who encourage participation in activities
Accepted being different
Risks: mood/behavior difficulties, exclusion, lack of independence
Chapter 37 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved.

12. Young Adulthood
Although some adolescents with disabilities do achieve independence, many struggle, and some never attain this goal
For young adults who cannot achieve true independence, a number of alternatives available
A young adult’s ability to cope and become as independent as possible depends on
Degree of the disability
Effectiveness of family to plan and manage transition emotionally and financially
Chapter 37 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved.

13. Principles of Family-Centered Care: Roles of the Professional, Society, and Community
Family-centered care: collaborative relationship based on mutual respect and open communication
Professionals need to be flexible and responsive in coordinating efforts with family and other professionals
Greater appreciation for people with disabilities in today’s society; there are more educational, vocational, housing, and support services available
Federal funding provides protection and advocacy: IDEA of 2004; ADA of 1990
Chapter 37 slides in Children with Disabilities, Seventh Edition, Online Companion Materials. Copyright © 2013 Paul H. Brookes Publishing Co., Inc. All rights reserved.