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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.