Family routines, the perceived impact of autism, and family quality of life of South African families raising children with autism spectrum disorder Dr. Liezl Schlebusch Early Childhood Intervention
University of Pretoria
Human flourishing What makes a good life?
335BC
Individual quality of life of people with intellectual and developmental disabilities
1980s
Family quality of life
2000s
Flourishing Families
Family Quality of Life The ‘conditions where the family’s needs are met, where members of the family enjoy their life together, and that they have the chance to do things which are important to them’. (Park et al. 2003 p. 368)
It is conceptualised as a multidimensional construct that can be measured by indicators that are common to all families. (Samuel et al.2012)
Families that function well support the development of their children and the functioning and ongoing stability of societies (Isaacs et al., 2007; Samuel et al., 2012).
DYNAMIC Family-unit factors 1. Family Routines 2. Family Beliefs Family Unit Concepts
Family Quality of Life
Positive appraisal
Satisfaction
Regularity
with family
of family
quality of life
routines
Negative appraisal
Participants 180 families in Gauteng, South Africa Father (~39yrs)
Educational background of parent: Grade 11 or less 9% Grade 12 17% Diploma 32% Bachelor’s degree 15% Postgraduate degree 27%
Mother (~36yrs)
Families who have others living in the same household: Grandparent(s) 18% Related family members and/or friends 22% Paid helper 13%
Employment status of parent: Employed full-time 69% Employed part-time 7% Homemaker 9% Not currently employed 15%
Oldest child (~9yrs) / Youngest child (~4yrs)
Number of children in household: One child 29% Two children 42% Three children 19% Four or more children 10%
Child with ASD (~5yrs)
Gender: Boys 81% Girls 19%
Others
Level of severity: Mild 35% Moderate 52% Severe 13%
Family type: One-parent family Two-parent family Blended or stepfamily
20% 75% 5%
Monthly household income: Struggling 21% Just getting by 35% Doing okay 31% Managing well 9% Well off 4%
Family Measures Measures
Rating scale
Family Routines Inventory (Boyce et al., 1983)
Never/ Almost never
Sometimes/ 1-2 times a week
Not at all
To a mild degree
Dissatisfied
Neutral
Mostly / 3-5 times a week
Always / Almost every day
My children do the same things each morning as soon as they wake up. Parents and children play together sometime each day. My family eats dinner at about the same time each night. Family Impact of Childhood Disability Scale (Trute & Hiebert-Murphy, 2012)
To a moderate To a substantial degree degree
The experience has taught my family that there are many special pleasures from my child with ASD. It has led to additional financial costs. Family Quality Of Life Scale (Hoffman et al., 2006) My child with ASD has support to accomplish goals at school. My family enjoys spending time together. My family has a way to take care of our expenses.
Very dissatisfied
Satisfied
Very satisfied
Results Measure with subscales Family Routines Inventory - Overall (Possible range 0 – 3) Child Routines Workday Routines Leaving and Homecoming Routines Mealtime Routines Leisure Routines
Mean
SD
1.84
0.398
2.21 1.95 1.95 1.92 1.84
0.625 0.468 0.776 0.712 0.732
3.06 2.58
0.540 0.719
3.83
0.610
4.03 4.01 3.90 3.89 3.22
0.715 0.723 0.852 0.657 0.906
Family Impact of Childhood Disability Scale (Possible range 1 – 4) Positive Appraisal Negative Appraisal Family Quality Of Life Scale - Overall (Possible range 1 – 5) Disability-related Support Family Interaction Physical/Material Well-being Parenting Emotional Well-being
Results & Discussion Greater positive appraisals
.24*
.25* .50**
More regular family routines
-.25*
-.27* Lesser negative appraisals
Standardised regression weights * p < .05. ** p < .01
More satisfied with family quality of life
How can we help families to flourish?
A family quality of life approach can help guide service providers to think about and work towards what brings satisfaction to the families that they serve.
The Family Quality of Life Scale can be used as a conversation starter to identify areas of family strengths and family needs.
Regular family routines are an important consideration contributing to a family’s quality of life. What families do together on a regular basis is important for how they think about the impact of autism and their family well-being.
Get to know families and what they do on a daily basis.
Families can feel both positive and negative about the impact of their child with autism on the family. Reframing a situation and appraise it positively is important to help families cope.
Any supportive intervention to help a child with autism should facilitate the family’s sense of competence and confidence in managing their daily lives, and not interfere with the existing resources and capabilities that they require to maintain their family routines.
Flourishing is not a solo endeavor. - Barbara Fredrickson
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