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Kathleen Knafl , PhD, FAAN Marcia Van Riper, PhD, RN, FAAN George Knafl , PhD

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.

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Kathleen Knafl , PhD, FAAN Marcia Van Riper, PhD, RN, FAAN George Knafl , PhD

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  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 UniversityofNorth CarolinaatChapel 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 reliabilityand 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. 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

  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

  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

  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 UniversityofNorth CarolinaatChapel Hill

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