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.
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.
Authors: Maira Deguer Misko; Maiara Rodrigues dos Santos; Carolliny Rossi de Faria Ichikawa; Regina Aparecida Garcia de Lima; Regina Szylit Bousso Journal: Rev Lat Am Enfermagem Date: 2015 May-Jun
Authors: Angie Mae Rodday; Elizabeth J Pedowitz; Deborah K Mayer; Sara J Ratichek; Charles W Given; Susan K Parsons Journal: Res Nurs Health Date: 2012-04-30 Impact factor: 2.228
Authors: Subha Madhavan; Amy E Sanders; Wen-Ying Sylvia Chou; Alex Shuster; Keith W Boone; Mark A Dente; Aziza T Shad; Bradford W Hesse Journal: Am J Prev Med Date: 2011-05 Impact factor: 5.043
Authors: Jackelyn Y Boyden; Douglas L Hill; Russell T Nye; Kira Bona; Emily E Johnston; Pamela Hinds; Sarah Friebert; Tammy I Kang; Ross Hays; Matt Hall; Joanne Wolfe; Chris Feudtner Journal: J Pain Symptom Manage Date: 2021-08-20 Impact factor: 3.612
Authors: Sarah Mitchell; Karina Bennett; Andrew Morris; Anne-Marie Slowther; Jane Coad; Jeremy Dale Journal: Palliat Med Date: 2019-08-21 Impact factor: 4.762