family and DD Flashcards
Medical Model
Viewed as patients with diseases or organically based disorders
Physicians were the experts and parents had little involvement in treatment
Developmental Model
Focused on education and training
Mediator Model
Greater parental involvement in programming for their children
Biological Model
Genetic, physical health, and pharmaceutical knowledge about treatment
Role of advocacy
Parents’ own sense that their advocacy role was a strategy to achieve change
Outcome of advocacy
Parents’ belief that their actions would exert a positive effect on their environment
Role of professionals
Professionals’ response to the parents’ efforts
Focus of advocacy
Advocating for things to come or past injustices
Effect on personal life
Advocacy actions to create interpersonal links and advocacy for time, money, relaxation
Emotional issues
arents’ own emotional response (e.g., feelings of confidence, empowerment, guilt, anxiety)
Multiple Roles of Parents: Mediators
Parents are therapists that implement treatment programs
Carry out the intervention on a day-to-day basis
Parents are involved in the process of change
Many parents aren’t able to be mediators due to time or resource constraints
Multiple Roles of Parents: Educators
Many parents feel that they have to try to meet their child’s needs
Educating others about their child’s disability helps many parents deal with others around them
Suggest more resources for the public, grandparents, and friends
Multiple Roles of Parents: Caregivers
Main role is caregiver
Much of their energy is spent caring for their child
Parents often concerned about their children meeting developmental milestones
“wear and tear” hypothesis: family stress increases over time
Caregiver stress varies based on severity of disability and behavioural challenges
May develop unrealistic expectations for their child
Positive Outcomes
Research shows that many families with children with developmental disabilities cope well
Many parents report positive impacts (e.g., personal growth, relations with others, changes in values)
Factors that Help Parents in their Role as Caregiver: Family Resources
Personal resources Resiliency and coping strategies Family cohesion/unity Perfect balance of cohesiveness and independence Financial resources
Social Support
Informal social support networks have a positive impact on family quality of life. Includes support from:
Immediate and extended family
Friends and neighbours
Some families of children with disabilities become socially isolated
Professional Support
Formal professional support through organizations, psychologists, physicians, child services, schools
Services can also potentially increase stress if the nature of service delivery is not effective
Need to seek out new services at transition points
what are some challenges with professional support?
Physicians often uninformed about developmental disabilities but new guidelines for primary health care are hoping to help this
Schools and community organizations are not always flexible enough to meet needs
Parents are the experts on their child not necessarily the professional
Problem-focused coping
Attempting to alter the problem or situation
Emotion-focused coping
Attempting to reduce the emotional distress caused by the situation
Perception-focused coping
Cognitive appraisals (perception of aging/stress, sense of meaning by being a parent of a child with special needs, sense of mastery, optimistic outlook and trust in others who care, focus on the positive, persistence, seeking information, spirituality/religion)
Changing Roles of Aging Parents
There is now a longer life-expectancy for people with developmental disabilities
Parents and other family members continue to provide care at home
Long-term planning for accommodation is a primary concern of older parents
Concerns about ensuring their child’s ongoing emotional and social support needs
Siblings
Can be difficult for parents to meet the needs of their other children (e.g., less attention)
Caregiving and educating tends to be assumed by siblings (even younger siblings will take on these roles)
Siblings tend to maintain high levels of contact into adulthood and play an active role (e.g., making important life decisions, finances, advocacy for services)
Spouse/Partner
Many parents feel they are unable to fully meet the needs of their partner/spouse
grandparents
Can help relieve some of the burden of parenting by acting as extra caregivers
Meeting the Needs of Families
Caregiving responsibilities extend across the lifespan
Disability services tend to focus on the needs of parents of young children with disabilities
A variety of services is required for all members of families at different stages of development
Ongoing need for out-of-home placements and respite care
Long waitlists for accommodations are a concern
Things to Consider when working with Families with a Child with a Developmental Disability
Recognize transition periods and acknowledge that such times can be stressful for families.
Consider and anticipate new and changing roles that may occur at such times.
Listen carefully to parents and respect their priorities, which may not be the same as yours.
Take an individualized approach that incorporates the specific wishes of the family. Remember to consider the needs of all family members.
Be flexible and be prepared to learn.
