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

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)

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

Conceptualization of Intersection of Family Life & Childhood Chronic Conditions

Varied conceptual lensesSystemsDevelopmental/Life courseSymbolic InteractionStress and CopingResilienceFamily Management Style

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

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

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

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

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

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

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/

Data CollectionChronic Physical Condition

Telephone survey

Data collected between 09/04 & 08/06

Down SyndromeOnline survey Data collected between

04/10 & 12/11

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

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

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

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

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

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

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

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)

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

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

The University of North Carolina at Chapel Hill