Family Life - Move & Play Study

IN BRIEF © ALYSSA LAFORME FISS AND THE MOVE & PLAY STUDY TEAM, 2013

Information for Families and Service Providers

Who participated? 

430 preschool (age 18 months to 5 years) children with Cerebral Palsy (CP) and their families were recruited from many regions of Canada and the USA; all children had CP or problems with motor activities, muscle tone, and balance.

What did we do? 

We focused on learning what helps children with CP progress in their ability to move around, take care of themselves (self-care: feeding, dressing, bathing), and play.

What was our goal? 

We wanted to find out what we can change about the way we help young children who need rehabilitation services, so we can focus on providing the services that are most beneficial.

How did we do this? 

We collected information about many characteristics of the child, the family, and the recreation and rehabilitation services they receive, during 3 sessions over a one-year period.

Learning about family life

This report focuses on what parents told us about their families at the 2nd session (a telephone interview). We asked about many different things, for example: family activities, the supports that families have in caring for their children, and the home environment. 

We used 4 questionnaires about family life:

Family Environment Scale1

A standardized measure: 90 statements (true or false) about many aspects of family functioning, for example: relationships, recreation and activities, conflict, organization, and beliefs. Examples of statements: “there is a feeling of togetherness in our family”; “family members often go to the library”.

Family Expectations of Child

Five questions about expectations parents have of their children; for example: to do the best they can, and to do all regular family activities, within their level of ability.

Family Support to Child

Six questions about how parents help their children to do self-care activities, play, and move around; for example: offering encouragement and recognizing accomplishments, and responding in a positive way to the child’s interests.

Family Support Scale2 

A standardized measure: 18 questions about people and groups helpful to parents raising a young child with a disability: for example, immediate and extended family members, friends, co-workers, people in various community groups, and in health and education services.

Comparisons between families of children with and without CP:

• Small substudy of 110 families with preschool children who did not have CP or problems with movement
• We wanted to learn if family expectations and family support of children were similar or different between these 2 groups (i.e. compared 430 children with CP and 110 children without CP)

Why is it important to know about family life?

• We know that family environment and other family characteristics influence children’s development
• We wanted to understand what aspects of family support are most likely to promote beneficial outcomes for children

What did we learn?

We wanted to know if family characteristics were affected by the child’s age, gender, and Gross Motor Classification System³ (GMFCS) level. GMFCS has 5 levels of motor abilities; children in level I have the highest motor abilities and children in level V have the least motor abilities.

We found that age and gender did not have any effect on these measures of family life.

Family Environment Scale

• On average, families reported a healthy family environment
  
• Scores were similar for all families and the child’s level of motor ability did not have an effect on scores
  

Family Expectations of Child

• Scores were on a scale of 1 to 7 (1=not at all; 7= to a very great extent)
  
• On average, families reported that they had high expectations of their children; the average score was “6” (expectations were “to a great extent”)
  
• Parent responses varied for children across some of the levels of the GMFCS. Parents reported expectations for children in level V that were slightly lower than for children in all other levels (average score was 5: “to a fairly great extent”). Some parents commented that their expectations were in line with their children’s abilities. In other words, they usually did not expect their children to try things that were well beyond their abilities
  

Family Support to Child

• Scores were on a scale of 1 to 7 (1=not at all; 7= to a very great extent)
  
• Average score for all children was “6”. This means that parents encouraged and supported their children “to a great extent”, when helping them learn how to play, take care of themselves, and move around
  
• There were no meaningful differences in parent responses for children across all GMFCS levels
  

Family Support Scale

Parents noted which people or groups were available to them and rated the helpfulness of each of them.

We looked at this information in 2 ways:

• defined 3 groups of supports: immediate family; “next circle of support” (e.g. friends); formal support groups/services; then rated the helpfulness of each group as well as the “average helpfulness” overall for all supports
  
• calculated the number of supports (people and/or groups) that were available and helpful to each family
  

Scores were on a scale of 1 to 7 (1=not at all helpful; 7=extremely helpful). 

Average “helpfulness” scores for each group:

• immediate family - 4 (“very helpful”)
  
• next circle of support - 3 (“generally helpful”)
  
• formal support groups - 4 (“very helpful”)
  
• Average helpfulness score overall (all available supports) was 3 (“generally helpful”).
  

Average number of supports that were available and helpful to the families:

• immediate family - 4 persons
  
• next circle of support - 3 persons
  
• formal support groups - 5 groups
  

Average total number of supports was 11 persons or groups per family (range was 4-18).

• There were no meaningful differences in parent responses for children across all GMFCS levels; regardless of the child’s motor abilities, parents reported receiving similar levels of help and support
  

Comparisons with families of children without CP

• Family expectations and support of children did not differ between families of children with or without CP. Most families had high expectations of their children, and supported their children to a great extent, while considering their child’s abilities
  

What does this mean?

This is the fifth of a series of summaries, reporting results from the Move & PLAY study.

Other summaries reporting the results of this study are available on the Move & Play Study page on the CanChild website.

References:

1. Moos RH, Moos BS. Family Environment Scale. Development, Applications, and Research. 3rd edition. Palo Alto, CA: Mind Garden; 2002.

2. Dunst CJ, Jenkins V, Trivett CM. Measuring social support in families with young children with disabilities. IN Supporting and Strengthening Families. Volume 1. Methods, Strategies, and Practices. Dunst CJ, Trivette CM, Deal AG (Eds.). Cambridge, MA: Brookline Books; 1994: 152-160.

3. Palisano RJ, Rosenbaum P, Walter S, Russell D, Wood E, Galuppi B: Development and validation of a Gross Motor Function Classification System for children with cerebral palsy. Developmental Medicine and Child Neurology 39:214-223, 1997

FOR MORE INFORMATION, CONTACT: Alyssa LaForme Fiss fiss_al@mercer.edu

For more details regarding Family Life, please refer to our paper: - LaForme Fiss A, Chiarello L, Bartlett D, Palisano R, Jeffries L, Almasri N. Family ecology of young children with cerebral palsy. Child: Care, Health and Development. 2014; 40:562-571 .

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Understanding Determinants of Basic Motor Abilities, Self-care, and Play of Young Children with Cerebral Palsy

With funding from Canadian Institutes of Health Research (CIHR - Canada) MOP-81107

and National Institutes of Disability and Rehabilitation Research (NIDRR - USA) #H133G060254

October 2013 (updated Jan 2016)