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![Page 1: Developmental Delay and the Family Management of Childhood Chronic Conditions: A Comparative Analysis Kathleen Knafl, PhD, FAAN Marcia Van Riper, PhD,](https://reader030.fdocuments.us/reader030/viewer/2022032708/56649e5d5503460f94b56c41/html5/thumbnails/1.jpg)
Developmental Delay and the Family Management of Childhood Chronic
Conditions: A Comparative Analysis
Kathleen Knafl, PhD, FAANMarcia Van Riper, PhD, RN, FAAN
George Knafl, PhD
The University of North Carolina at Chapel Hill
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Intersection of Family Life and Childhood Chronic Conditions
Dominant themes in the literatureReciprocal nature of family & child
response (Barlow & Ellard, 2006; Carr & Springer, 2010; Herzer, et al., 2010)
Common & condition-specific challenges (Rolland, 1999)
Variation in nature & effectiveness of family-focused interventions (Carr, 2009; McBroom & Enriquez, 2009)
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Purpose of Presentation Report results of an analysis
assessing reliability and applicability of Family Management Measure (FaMM) for families having a child with a developmental disability
Compare family management of families with a child with a developmental disability to that of families with a child with a chronic physical illness.
Identify covariates of family management
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Conceptualization of Intersection of Family Life & Childhood Chronic Conditions
Varied conceptual lensesSystemsDevelopmental/Life courseSymbolic InteractionStress and CopingResilienceFamily Management Style
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Family Management Style Framework (FMSF)
Focus on families’ efforts to incorporate condition management into everyday life (Knafl, Deatrick, & Havill, 2012).
Used primarily to study families of children with chronic physical conditions
Some evidence of applicability to other conditions
See Journal of Family Nursing, 2012, 18(1) – Special issue on FMSF
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Study Design
Secondary analysis of data from 2 studies.
Assessing Family Management of Childhood Chronic Illness (R01 NR08048, K. Knafl, PI)•Instrument development study
•Family Management Measure – FaMM
•Validation measures of child and family functioning; demographic information
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Study Design
Adaptation & Resilience in Families of Children with Down Syndrome (M. Van Riper, PI)
•Family life in the context of Down Syndrome
•Battery of measures (including FaMM) of family/ family member functioning; demographic information
Analysis focused on FaMM data from 2 studies
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Study Samples Chronic Physical Condition (CPC) (n=412
families) 100+ conditions; most frequent - type 1 diabetes, Crohn's,
cystic fibrosis, cerebral palsy, sickle cell, asthma Child age: 2-18 years; M=11.2 yrs Predominantly white (85%), college educated (57%),
26% >$100,000 & 29% < $40,00 income
Down Syndrome (DS) (n=483 families) Family member with condition age 1 mo. – 49 yrs;
most <18 years Predominantly white (91%), college educated (77%),
47% > $100,000 & 11% < $40,00 income
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Family Management Measure - FaMM
Identify family patterns of response to child’s chronic condition Retain individual perspectives Focus on incorporating condition into family life
Complement existing measures
Useful for researchers and clinicians
Reliable, valid, and broadly applicable
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Overview of the FaMM53 items
45 items completed by all parents 8 items completed by partnered parents only
Six Scales Child’s Daily Life Condition Management Ability Condition Management Effort Family Life Difficulty Parental Mutuality View of Condition Impact
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Scale # ofitems
ContentParents’ Perceptions of…
Child’s Daily Life 5 child & his/her everyday life (higher values – more normal life despite condition)
View of Condition Impact 10 seriousness of condition & its implications for child’s & family’s future (higher values-condition more serious)
Family Life Difficulty 14 extent to which condition makes family life more demanding (higher values-life more difficult)
Condition Management Effort
4 the time & work needed to manage the illness (higher values-greater work)
Condition Management Ability
12 competence to take care of the child’s condition (higher values-more capable)
Parental Mutuality (completed by partnered parents only)
8 support, shared views, & satisfaction with how couple works together to manage condition (higher values-greater satisfaction)
Family Management Measure (FaMM)*
nursing.unc.edu/research/famm/
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Data CollectionChronic Physical Condition
Telephone survey
Data collected between 09/04 & 08/06
Down SyndromeOnline survey Data collected between
04/10 & 12/11
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Results
Sample characteristics
Reliability of FaMM for new sample
Comparison of family management in families with and without a child with a developmental disability
Identification of covariate effects on management in families with a child with a developmental disability or a physical chronic condition
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Sample – Chronic Physical Condition
571 parents 407 mothers; 164 fathers65 single mothers; 0 single fathers
412 families159 with 2-participating parents253 with 1-participating parent
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Sample – Down Syndrome
539 parents 417 mothers; 122 fathers
41 single mothers; 8 single fathers
483 families 56 with 2-participating parents
427 with 1-participating parent
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Reliability of the FaMM for Parents of a Child with Down Syndrome
FaMM ScaleDS
Mother/Father CPC
Mother/FatherChild Daily Life .73/.73 .76/.79
Management Ability .72/.77 .72/.73
Management Effort .75/.78 .74/.78
Family Life Difficulty .92/.92 .90/.91
Parental Mutuality .88/.78 .79/.75
Condition Impact .71/.68 .73/.77
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Item Comparisons for Two Samples
Mean values for 43 (81%) of 53 FaMM items were significantly different for parents of children with DS vs. CPC
Item analysis: Controlled for type of parent (mother vs.
father) & type of family (partnered vs. single; 1 vs. 2 participating parents)
Adjusted for intra-familial correlation
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Examples of Group Differences Based on Item Means
“Our child enjoys life less because of the condition" significantly (p<.001) lower by 2.8 units for DS sample
"Many conditions are more serious than our child's" significantly (p<.001) greater by 2.4 units for DS sample
“It takes a lot of organization to manage our child’s condition” significantly (p<.01) greater by 1.6 units for DS sample
“It's hard to know what to expect from our child’s condition in the future” significantly (p>.01) greater by 1.1 units for DS sample
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FaMM Scale Comparisons for Two Samples*
No difference Child’s Daily Life (p=.28) Parental Mutuality (p=.09)
Management more optimal for DS families Difficulty (p<.05; 1.7 units) Effort (p<.01; 2.3 units) Impact (p<.01; 1.4 units)
Management less optimal for DS families Ability (p<.01; 2.1 units)
*After controlling for type of parent and family
19
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Parent/Family Effects on Family Management
More optimal for partnered parentsAbility (p<.05)Difficulty (p<.01)Effort (p<.01) Impact (p<.05)
More optimal for fathersEffort (p<.01)
More optimal when 2 parents participated in study
Mutuality (p<.01)
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Effects of Covariates on Family Management
FaMM Scale
Initial Analysis
(More Positive)
Covariate Analysis
(More Positive)
Child Daily Life No Difference Chronic
Management Ability Chronic Chronic
Management Effort DS DS
Family Life Difficulty DS No Difference
Parental Mutuality No Difference No Difference
Condition Impact DS DS
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ConclusionSupport for applicability of FaMM for parents
whose child has a developmental disability such as DSAcceptable internal consistency reliabilities
for 5 of 6 FaMM scales Items discriminate between samples Scales identify:
Differences in family management between samplesEffects of child, family, and parent variables on
family management
FaMM distinguishes shared and condition specific aspects of family management
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The University of North Carolina at Chapel Hill