Family support in pediatric palliative care: how are families impacted by their children's illnesses?
BACKGROUND
Palliative care programs have the opportunity to intercede and provide supportive care to parents whose families have been impacted by their children's illnesses. By understanding how families are impacted, programs can refine their service provision and investigate unmet needs.


OBJECTIVE
To determine how families are impacted and what factors are associated with greater impact.


METHODS
2008 cross-sectional telephone survey.


METHODS
Florida.


METHODS
Eighty-five parents whose children had life-limiting illnesses and were enrolled in Florida's publicly funded pediatric palliative care program.


METHODS
The Impact on Family (IOF) Scale.


RESULTS
The majority of parents who responded to the survey are white non-Hispanic (56%), married (54%), had graduated from college (33%), and live in a two-parent household (60%). For 11 of the 15 IOF questions, the results showed that 50% or more of parents agreed with items on the IOF. For example, 71% of parents indicated that their family had to give things up as a result of their children's illnesses. Multivariate analysis showed that having depressive symptoms was associated with greater impact on the family.


CONCLUSIONS
Our findings stress the importance of considering the needs of all family members when providing care to children and understanding and attempting to address family member's needs that may not be covered by pediatric palliative care services. Particular attention should be paid to parents with depressive symptoms, because they can receive supportive care in their children's pediatric palliative care programs.
Knapp
Caprice A
CA
Department of Epidemiology and Health Policy Research, University of Florida, Gainesville, Florida 32604, USA. cak@ichp.ufl.edu
Madden
Vanessa L
VL
Curtis
Charlotte M
CM
Sloyer
Phyllis
P
Shenkman
Elizabeth A
EA
D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D005431:Florida; D019538:Health Care Surveys; D006801:Humans; D007223:Infant; D008297:Male; D015999:Multivariate Analysis; D010166:Palliative Care / Q000458:organization & administration*; D010287:Parent-Child Relations; D010372:Pediatrics / Q000458:organization & administration*; D011368:Professional-Family Relations; D015397:Program Evaluation; D011594:Psychometrics; D011788:Quality of Life; D012044:Regression Analysis; D012944:Social Support; D013689:Telephone; D055815:Young Adult