Partners in Care: Together for Kids: Florida's Model of Pediatric Palliative Care

Knapp, Caprice; Madden, Vanessa; Curtis, Charlotte; Sloyer, Phyllis; Huang, I‐Chan; Thompson, Lindsay A.; Shenkman, Louis

doi:10.1089/jpm.2008.0080

Cited by 56 publications

(54 citation statements)

References 9 publications

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“…[17][18][19][20] The IOF was developed to measure the impact of children's illnesses on families, but has also been used with families of children with life-threatening illnesses. 13,14 The scale includes 15 items assessing various aspects of family stress and strain in various settings. Response categories for individual items are ''strongly disagree,'' ''disagree,'' ''agree,'' and ''strongly agree.''…”

Section: Methodsmentioning

confidence: 99%

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Does Decisional Conflict Differ Across Race and Ethnicity Groups? A Study of Parents Whose Children Have a Life-Threatening Illness

Knapp

Hinojosa

Baron-Lee

et al. 2014

Journal of Palliative Medicine

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Objective: Children with life-threatening illnesses and their families may face a myriad of medical decisions in their lifetimes. Oftentimes these complicated medical decisions cause disagreements among patients, families, and providers about what is the best course of action. Although no evidence exists, it is possible that conflict may affect subgroups of the population differently. This study aims to investigate how decisional conflict varies among racial and ethnic subgroups. Sample: Two hundred sixty-six surveys were completed with parents whose children have a life-threatening illness. All children lived in Florida and were enrolled in the Medicaid program. The Decisional Conflict Scale, overall and broken down into its five distinct subscales, was used to assess parental decision-making. Descriptive, bivariate, and multivariate analyses were conducted. Subgroup analyses were conducted on Latino respondents. Results: Our bivariate results suggest that minority parents report less Effective Decision Making ( p < 0.05) and report less Support in Decision Making ( p < 0.05) compared to white, non-Hispanic parents. For the subgroup analysis, we found that those who identify as Mexican American and Central/South American report having greater Uncertainty in Choosing Options ( p < 0.05) and less Values Clarity ( p < 0.05) as compared to Puerto Rican or Cuban Americans. Results from the multivariate analyses suggest that those whose primary language is not English are associated with greater Uncertainty in Choosing Options ( p < 0.05). Values Clarity was lower for children who were diagnosed with their life-threatening condition at birth ( p < 0.05) as compared to children diagnosed at a later time. Conclusions: Our study is the first to describe racial and ethnic differences in decisional conflict of parents of children with life-threatening illnesses. Significant differences exist by race, ethnicity, language spoken, and diagnosis time across several subdomains of decisional conflict. These differences are important to address when creating clinical care plans, engaging in shared decision-making, and creating interventions to alleviate decisional conflict.

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Section: Methodsmentioning

confidence: 99%

“…Florida created guidelines of diagnoses for admission and those were used to identify children eligible for this study. 14 The reader is referred to Knapp et al 14 for a list of diagnoses codes that are eligible for Florida's pediatric palliative care program. All of the children in our study were eligible for Medicaid.…”

Section: Samplementioning

confidence: 99%

Does Decisional Conflict Differ Across Race and Ethnicity Groups? A Study of Parents Whose Children Have a Life-Threatening Illness

Knapp

Hinojosa

Baron-Lee

et al. 2014

Journal of Palliative Medicine

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“…15 Florida has published its experience with the demonstration program developed in 2005 and titled Partners in Care: Together for Kids (PIC:TFK). 16 In April 2006, the state of Massachusetts signed into law ''An Act Providing Access to Affordable, Quality, and Accountable Care.'' The Pediatric Palliative Care Program was established in Section 24K of Chapter 111 of the General Laws.…”

Section: Formation Of the Ppcnmentioning

confidence: 99%

Massachusetts' Pediatric Palliative Care Network: Successful Implementation of a Novel State-Funded Pediatric Palliative Care Program

Bona

Bates²,

Wolfe³

2011

Journal of Palliative Medicine

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“…In paediatric palliative care, there is a broad spectrum of lifelimiting conditions requiring palliative care at a certain point during the disease trajectory. For example, Knapp et al identified more than 70 potentially life-limiting diagnoses (ICD-9 codes; differentiation into decimals not counted) [6].…”

Section: Cartographers In An Uncharted Terrainmentioning

confidence: 99%

Cartographers in an uncharted terrain—the importance of going the extra mile

Jünger

Radbruch

2012

Eur J Pediatr

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Partners in Care: Together for Kids: Florida's Model of Pediatric Palliative Care

Abstract: Florida's program is the first in the nation to provide government-subsidized pediatric palliative care from the point of diagnosis onwards. Lessons learned from Florida's experiences will help guide other states and health plans that desire to implement a similar model of care.

Cited by 56 publications

References 9 publications

Does Decisional Conflict Differ Across Race and Ethnicity Groups? A Study of Parents Whose Children Have a Life-Threatening Illness

Does Decisional Conflict Differ Across Race and Ethnicity Groups? A Study of Parents Whose Children Have a Life-Threatening Illness

Massachusetts' Pediatric Palliative Care Network: Successful Implementation of a Novel State-Funded Pediatric Palliative Care Program

Cartographers in an uncharted terrain—the importance of going the extra mile

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