Family support in pediatric palliative care: how are families impacted by their children's illnesses?

Family support in pediatric palliative care: how are families impacted by their children's illnesses?

Knapp CA; Madden VL; Curtis CM; Sloyer P; Shenkman EA

Journal Of Palliative Medicine

2010

Child; Cross-Sectional Studies; Female; Humans; Male; Young Adult; Adult; Health Care Surveys; Parent-Child Relations; Professional-Family Relations; Program Evaluation; Multivariate Analysis; Psychometrics; Florida; Regression Analysis; quality of life; adolescent; Preschool; Adaptation; Psychological; Palliative Care/organization & administration; infant; social support; Pediatrics/organization & administration; Telephone

CONTEXT: 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. DESIGN: 2008 cross-sectional telephone survey. SETTING: Florida. PATIENTS: Eighty-five parents whose children had life-limiting illnesses and were enrolled in Florida's publicly funded pediatric palliative care program. MAIN OUTCOME MEASURE: 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. CONCLUSION: 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.

2010

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