1. The Effects of a Child’s Illness on a Family Austin Hayes Pediatric Surgery Rotation

2. Overall Goal Address sick children’s impact on their family – Parents – Siblings – Household Economics Relationships, scholastic achievement, physical and psychiatric health, overall stress

3. 50 trauma pts, TS<13, mean age 7.6 yrs, average 1 month in hospital 1 year follow-up via telephone survey Results: – 75% of pts had continued disability – 46% siblings had emotional reactions, school problems and aggressive personality changes – 37% reported negative changes in their marriage – 58% of reported that one parent stopped working to care for child – 25% depleted entire savings or gone into debt – Only 20% report no change in family dynamic or finances J Pediatr Surg. 1989 Jan;24(1):103-5; discussion 105-6.

4. Effect on Siblings

5. Children’s Hospital Cincinnati Measured depressive symptoms, self-concept, and behavior in siblings of children with severe pediatric TBI Used parent, teacher and self assessment tools 12 siblings, follow-up at 3-18 months J Head Trauma Rehabil 2001;16(6):587–594

6. Results No difference in – depressive symptoms – self-concept – behavior between the siblings and their classmates Limitations – Small sample size (12 siblings) – Limited length of follow-up (3-18 months) – Only sibling closest in age to pt. was studied

7. Goal to assess association between chronic childhood health problems and the mental health of siblings 1869 families, 3294 children (4-16 yrs), 91% participation J Dev Behav Pediatr. 1988 Jun;9(3):117-21.

8. Methods Parents/teachers/children completed written surveys Used SDI to approximate diagnosis of: – conduct disorder – ADHD – emotional disorder (over-anxious, depression, and OCD) – Somatization Separate scales used for measuring “social adjustment” Control group: siblings of physically healthy children

9. Results

10. Siblings were generally at little increase risk of psychiatric disorders or social maladjustment Some trend towards increased risk for emotional disorders (depression, anxiety, or OCD) Increased difficulty getting along with peers No increased risk of conduct disorder, ADHD, or somatization

11. Limitations A possible bias may occur if mothers of chronically ill children took less account of mental health of social adjustment problems of physically healthy children than did mothers without chronically ill children

12. Effect on Caregivers

13. Hypothesis: child’s illness and associated stress may have implications for subsequent health symptoms in family members Single caregiver interviewed three days after PICU admission and 9 wks post admission Caregiver’s health was assessed with the Medical Outcomes Study Short-Form General Health Survey (MOS). Admission and 9wk scores compared Issues Ment Health Nurs. 1995 Nov-Dec;16(6):533-45

14. Results No observed decrease in: – Health perception – Pain – physical/social/role functioning Significant decreases in mental health scores observed (22.6->20.2)

15. – After stratification: If greater potential for chronicity, parents had a significantly greater decline in mental health and were in the range of “poor mental health” at the 9-week posttest Statistical significance was lost in caregivers whose illness was thought to have little chance of chronicity

16. Limitations Small study size (20) Lack of pre-illness assessment Limited follow-up (9 wks) Subjective scoring Potential for childhood illness chronicity not used for stratification in other outcomes of health and well-being

17. Parents given questionnaires regarding their perception of relationship changes after cancer diagnosis 35 couples with children aged 2-16 1-7 years since diagnosis (leukemia, brain tumors, bone and soft tissue sarcomas, only 4 couples>4yrs from diagnosis) Health Soc Work. 2003 Nov;28(4):255-63.

18. Questionnaire Measured “change in marital quality” ENRICH 10-item scale assessing perceived quality of his/her marriage (10 dimensions) – Spouse’s personal traits – Communication – Conflict resolution – Financial Management – Leisure activities – Sexuality – Parenting – Relationship with extended family – Division of household labor – Interpersonal trust Each dimension given +1 (improvement), 0 (no change), -1 (deteriorated)

19. Largest negative effect was on sexual relationship (only one couple agreed that their sexual relationship improved) Husbands noted > positive change in relationship than wives

20. Positive change in relationships diminished at four years Significant deterioration noted if child ill >5 years

21. Study Limitations Not prospective Couples who divorced after diagnosis were excluded Selection bias (couples volunteered) Small size (35 couples) No long term follow-up No control group No stratification for child’s health/prognosis

22. Prospective Longitudinal study comparing stress and coping in mothers of 8-year-old VLBW (<1500g) and term children 110 high-risk VLBW, 80 low-risk VLBW, and 112 term J Pediatr. 2007 Nov;151(5):463-9.

23. Results No significant difference in parental divorce rate in the 3 groups – 14 (16%) families of high-risk VLBW – 4 (7%) families of low-risk VLBW children – 11(12%) families of term children No difference is parenting/marital satisfaction, family cohesion, or psychological distress

24. Overall Conclusions Children with chronic illness do place additional stress on their families Siblings' mental health and school performance is generally unchanged. One study demonstrates increased risk for emotional disorders and difficulty with interaction with peers Acutely, potential chronicity of illness affects caregiver mental health After cancer diagnosis, families generally note marital improvement in areas of communication and bonding. Sexual relationship show most significant deterioration. After eight years, VLBW, and term families had no difference in divorce rates, parenting/marital satisfaction, family cohesion, or psychological distress.

25. The End