1. Developmental Delay and the Family Management of Childhood Chronic Conditions: A Comparative Analysis Kathleen Knafl, PhD, FAAN Marcia Van Riper, PhD, RN, FAAN George Knafl, PhD The University of North Carolina at Chapel Hill

2. Intersection of Family Life and Childhood Chronic Conditions  Dominant themes in the literature  Reciprocal 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)

3. 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

4. Conceptualization of Intersection of Family Life & Childhood Chronic Conditions Varied conceptual lenses  Systems  Developmental/Life course  Symbolic Interaction  Stress and Coping  Resilience  Family Management Style

5. 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

6. 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

7. 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

8. 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

9. 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

10. Overview of the FaMM  53 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

11. Scale# of items Content Parents’ 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/

12. Data Collection  Chronic Physical Condition  Telephone survey  Data collected between 09/04 & 08/06  Down Syndrome  Online survey  Data collected between 04/10 & 12/11

13. 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

14. Sample – Chronic Physical Condition  571 parents  407 mothers; 164 fathers  65 single mothers; 0 single fathers  412 families  159 with 2-participating parents  253 with 1-participating parent

15. 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

16. Reliability of the FaMM for Parents of a Child with Down Syndrome FaMM Scale DS Mother/Father CPC Mother/Father Child 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

17. 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

18. 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

19. 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

20. Parent/Family Effects on Family Management  More optimal for partnered parents  Ability (p<.05)  Difficulty (p<.01)  Effort (p<.01)  Impact (p<.05)  More optimal for fathers  Effort (p<.01)  More optimal when 2 parents participated in study  Mutuality (p<.01)

21. Effects of Covariates on Family Management FaMM Scale Initial Analysis (More Positive) Covariate Analysis (More Positive) Child Daily LifeNo DifferenceChronic Management AbilityChronic Management EffortDS Family Life DifficultyDSNo Difference Parental MutualityNo Difference Condition ImpactDS

22. Conclusion  Support for applicability of FaMM for parents whose child has a developmental disability such as DS  Acceptable internal consistency reliabilities for 5 of 6 FaMM scales  Items discriminate between samples  Scales identify:  Differences in family management between samples  Effects of child, family, and parent variables on family management  FaMM distinguishes shared and condition specific aspects of family management

23. The University of North Carolina at Chapel Hill