family and DD

Question 1

Medical Model

Answer 1

Viewed as patients with diseases or organically based disorders
Physicians were the experts and parents had little involvement in treatment

Question 2

Developmental Model

Answer 2

Focused on education and training

Question 3

Mediator Model

Answer 3

Greater parental involvement in programming for their children

Question 4

Biological Model

Answer 4

Genetic, physical health, and pharmaceutical knowledge about treatment

Question 5

Role of advocacy

Answer 5

Parents’ own sense that their advocacy role was a strategy to achieve change

Question 6

Outcome of advocacy

Answer 6

Parents’ belief that their actions would exert a positive effect on their environment

Question 7

Role of professionals

Answer 7

Professionals’ response to the parents’ efforts

Question 8

Focus of advocacy

Answer 8

Advocating for things to come or past injustices

Question 9

Effect on personal life

Answer 9

Advocacy actions to create interpersonal links and advocacy for time, money, relaxation

Question 10

Emotional issues

Answer 10

arents’ own emotional response (e.g., feelings of confidence, empowerment, guilt, anxiety)

Question 11

Multiple Roles of Parents: Mediators

Answer 11

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

Question 12

Multiple Roles of Parents: Educators

Answer 12

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

Question 13

Multiple Roles of Parents: Caregivers

Answer 13

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

Question 14

Positive Outcomes

Answer 14

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)

Question 15

Factors that Help Parents in their Role as Caregiver: Family Resources

Answer 15

Personal resources
Resiliency and coping strategies
Family cohesion/unity
Perfect balance of cohesiveness and independence
Financial resources

Question 16

Social Support

Answer 16

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

Question 17

Professional Support

Answer 17

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

Question 18

what are some challenges with professional support?

Answer 18

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

Question 19

Problem-focused coping

Answer 19

Attempting to alter the problem or situation

Question 20

Emotion-focused coping

Answer 20

Attempting to reduce the emotional distress caused by the situation

Question 21

Perception-focused coping

Answer 21

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)

Question 22

Changing Roles of Aging Parents

Answer 22

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

Question 23

Siblings

Answer 23

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)

Question 24

Spouse/Partner

Answer 24

Many parents feel they are unable to fully meet the needs of their partner/spouse

Question 25

grandparents

Answer 25

Can help relieve some of the burden of parenting by acting as extra caregivers

Question 26

Meeting the Needs of Families

Answer 26

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

Question 27

Things to Consider when working with Families with a Child with a Developmental Disability

Answer 27

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.