Effect of an integrated care system on utilization for CSHCN in Florida.

In 2006, Florida began a pilot program under a federal Medicaid waiver to reform its Medicaid program in Broward and Duval counties. The Children's Medical Services Network, a subcontracted health care delivery system for Florida's children with special health care needs (CSHCN) enrolled in public insurance programs, participated in Medicaid reform through an Integrated Care System (ICS) for its enrollees. The ICS constitutes a significant departure from the subcontracted fee-for-service system used to deliver care to CSHCN in the non-reform counties, and limited information exists about its impact.

Caring for children with life-threatening illnesses: impact on White, African American, and Latino families.

We describe the racial and ethnic variation in family impact resulting from caring for a child with a life-threatening illness. Parents of children aged 2-21 years diagnosed with a potentially life-threatening illness and enrolled in Florida's Medicaid and Children's Medical Services Network programs were surveyed. Two hundred sixty-six telephone surveys were conducted in English and Spanish between November 2007 and April 2008.

Health status and health-related quality of life in a pediatric palliative care program.

Background: Children with life-threatening illnesses have unique physical and psychosocial needs that pediatric palliative care programs can address. Integrated programs strive to address these needs from the point of diagnosis through death, if needed, at the same time that curative care is provided. To better understand the variation in these needs, we assessed the health status and health-related quality of life (HRQOL) of children enrolled in an integrated pediatric palliative care program.

Assessing the congruence of transition preparedness as reported by parents and their adolescents with special health care needs.

Several studies have investigated how prepared adolescents are to transition to adult health care and barriers to transition for adolescents with special health care needs. The majority of these studies, however, have only assessed these experiences from the parents' point of view. Our study aims to assess the congruence of adolescents and parents reported transition planning and the factors associated with planning.

Internet use and eHealth literacy of low-income parents whose children have special health care needs.

Background: The Internet has revolutionized the way in which many Americans search for health care information. Unfortunately, being able to use the Internet for this purpose is predicated on having access to the Internet and being able to understand and comprehend online health information. This is especially important for parents of children with special health care needs who are forced to make many medical decisions throughout the lives of their children.

Age group differences in healthcare access for people with disabilities: are young adults at increased risk?

Purpose: The purpose of this study was to quantify and describe the population of young adults with disability in Florida and to assess correlates of healthcare access in this population in contrast with adults belonging to middle and older age groups.

Methods: This study analyzed data of 36,704 respondents obtained from the 2007 Florida Behavioral Risk Factor Surveillance System. A test for homogeneity of the risk difference across the three age groups was conducted using inverse weighting to adjust for confounding and selection bias.

Pediatric nurses' attitudes toward hospice and pediatric palliative care.

Several studies have investigated nurses' attitudes toward hospice and palliative care for adults, yet little information exists about pediatrics. Assessing pediatric nurses' attitudes is especially important in Florida, where a publicly funded pediatric palliative care program operates in eight cities across the State. The aims of this study were 1) to assess the attitudes toward hospice and palliative care, and 2) to examine the associations between sociodemographic and nursing care factors and nurses' attitudes toward hospice and palliative care.

Effects of an Integrated Care System on quality of care and satisfaction for children with special health care needs.

To assess the effects of an Integrated Care System (ICS) on parent-reported quality of care and satisfaction for Children with Special Health Care Needs (CSHCN). In 2006 Florida reformed its Medicaid program in Broward and Duval counties. Children's Medical Services Network (CMSN) chose to participate in the reform and developed an ICS for CSHCN.

Spirituality of parents of children in palliative care.

Aims: To determine the spirituality of parents whose children have life-limiting illnesses and to determine the factors associated with parents' spirituality.

Methods: Telephone survey of 129 parents whose children were enrolled in a pediatric palliative care program in Florida. The Functional Assessment of Chronic Illness Therapy-Spiritual Well-being (FACIT-Sp) scale was used to measure parents' spirituality.

Information seeking behaviors of parents whose children have life-threatening illnesses.

Objectives: For children with life-threatening illnesses we sought to (1) understand the associations between parental characteristics and preferred health information sources, and (2) assess the e-health literacy of Internet-users.

Study Design: Cross-sectional, telephone survey of 129 parents whose children are in a pediatric palliative care program in Florida.

Results: Four out of five parents report that they use the Internet, and 64% of Internet-users use it daily.

Factors affecting decisional conflict for parents with children enrolled in a paediatric palliative care programme.

Unlabelled: Palliative care programmes have the potential to affect several health outcomes for children and families, including reducing decisional conflict.

Method: A telephone survey was conducted with 140 parents of children with life-limiting illnesses enrolled in Florida's publicly funded paediatric palliative care programme (Partners in Care: Together for Kids).

Results: Multivariate results suggest that parents with less than a high school education had decisional conflict scores (DCS) that were 13 points higher (p<0.

Parents' experiences in choosing a health plan for their children with special health care needs.

To investigate the information sources, and the perceived helpfulness of each source, that parents used when choosing a health plan for their children with special health care needs (CSHCN) and to determine how parents' perceptions varied by their sociodemographic characteristics and their children's enrollment status (newly versus previously enrolled). In Florida, a cross sectional study was carried out using 2007 telephone survey data from 500 parents. Sixty-three percent of parents used at least one information source to choose a health plan for their CSHCN.

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

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.

Assessing non-response bias in pediatric palliative care research.

National experts have recognized a need for increased research in pediatric palliative care. However, when conducting research it is important to use rigorous methods, report significant and non-significant findings, and include information on responders and non-responders. Most studies do not present information on non-responders, yet this is critical as the results many not be generalizable if there are inherent differences between the two groups.

Paediatric nurses' knowledge of palliative care in Florida: a quantitative study.

Nurses routinely identify and suggest patients to physicians for possible referral to palliative care and discuss potential referrals with families. Knowledge of palliative care is essential for nurses, especially in paediatrics, where palliative care is less common than with adults. This study uses data from surveys from 279 paediatric nurses across Florida, USA.

Effect of a pediatric palliative care program on nurses' referral preferences.

Purpose: Florida was the first state to develop and implement a publicly funded pediatric palliative care program, which provides supportive care services to children and families from the point of diagnosis onward. Nurses employed by the Florida Department of Health, Children's Medical Services Network (CMSN) play an important role in this program as they are charged with identifying children with life-limiting illnesses in their caseloads for referral to the program. This study aims to estimate the differtences in referral preferences of nurses who work in Partners in Care: Together for Kids (PIC:TFK) program areas versus nurses who work in non-PIC:TFK areas.

Music therapy in an integrated pediatric palliative care program.

National experts have recommended that children with life-limiting illnesses receive integrated palliative and medical care. These programs offer a variety of services, including music therapy. Using survey data from parents whose were enrolled in Florida's Partners in Care: Together for Kids (PIC:TFK) program, this study investigates parents' experiences with music therapy.

Partners in care: together for kids: Florida's model of pediatric palliative care.

Background: Many children with life-limiting illnesses in the United States could benefit from pediatric palliative care. However, national, state, and local barriers exist that hinder provision. One national barrier is the Medicare hospice reimbursement regulation that limits the provision of government subsidized hospice care to the final 6 months of life.

A longitudinal study of a pediatric practice-based versus an agency-based model of care coordination for children and youth with special health care needs.

Background: Care coordination has been shown to improve the quality of care for children and youth with special health care needs (CYSHCN). However, there are different models for structuring care coordination in relation to the medical home and most Title V agencies use an agency-based model of care coordination. No studies have prospectively compared a practice-based care coordination model to a Title V agency-based care coordination model.

A family-centered, community-based system of services for children and youth with special health care needs.

Objective: To present a conceptual definition of a family-centered system of services for children and youth with special health care needs (CYSHCN). Previous work by the Maternal and Child Health Bureau to define CYSHCN has had widespread program effects. This article similarly seeks to provide a definition of a system of services.