Jackelyn Y Boyden1, Martha A Q Curley2, Janet A Deatrick3, Mary Ersek4. 1. University of Pennsylvania School of Nursing, Philadelphia, Pennsylvania. Electronic address: jboyden@upenn.edu. 2. University of Pennsylvania School of Nursing, Philadelphia, Pennsylvania; University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania. 3. University of Pennsylvania School of Nursing, Philadelphia, Pennsylvania. 4. University of Pennsylvania School of Nursing, Philadelphia, Pennsylvania; Corporal Michael J. Crescenz VA Medical Center, Philadelphia, Pennsylvania.
Abstract
CONTEXT: As children with life-limiting illnesses (LLIs) and life-threatening illnesses (LTIs) live longer, challenges to meeting their complex health care needs arise in homes and communities, as well as in hospitals. Integrated knowledge regarding community-based pediatric palliative care (CBPPC) is needed to strategically plan for a seamless continuum of care for children and their families. OBJECTIVES: The purpose of this integrative review article is to explore factors that are associated with the use of CBPPC for U.S. children with LLIs and LTIs and their families. METHODS: A literature search of PubMed, CINAHL, Scopus, Google Scholar, and an ancestry search was performed to identify empirical studies and program evaluations published between 2000 and 2016. The methodological protocol included an evaluation of empirical quality and explicit data collection of synthesis procedures. RESULTS: Forty peer-reviewed quantitative and qualitative methodological interdisciplinary articles were included in the final sample. Patient characteristics such as older age and a solid tumor cancer diagnosis and interpersonal factors such as family support were associated with higher CBPPC use. Organizational features were the most frequently discussed factors that increased CBPPC, including the importance of interprofessional hospice services and interorganizational care coordination for supporting the child and family at home. Finally, geography, concurrent care and hospice eligibility regulations, and funding and reimbursement mechanisms were associated with CBPPC use on a community and systemic level. CONCLUSION: Multilevel factors are associated with increased CBPPC use for children with LLIs or LTIs and their families in the U.S.
CONTEXT: As children with life-limiting illnesses (LLIs) and life-threatening illnesses (LTIs) live longer, challenges to meeting their complex health care needs arise in homes and communities, as well as in hospitals. Integrated knowledge regarding community-based pediatric palliative care (CBPPC) is needed to strategically plan for a seamless continuum of care for children and their families. OBJECTIVES: The purpose of this integrative review article is to explore factors that are associated with the use of CBPPC for U.S. children with LLIs and LTIs and their families. METHODS: A literature search of PubMed, CINAHL, Scopus, Google Scholar, and an ancestry search was performed to identify empirical studies and program evaluations published between 2000 and 2016. The methodological protocol included an evaluation of empirical quality and explicit data collection of synthesis procedures. RESULTS: Forty peer-reviewed quantitative and qualitative methodological interdisciplinary articles were included in the final sample. Patient characteristics such as older age and a solid tumor cancer diagnosis and interpersonal factors such as family support were associated with higher CBPPC use. Organizational features were the most frequently discussed factors that increased CBPPC, including the importance of interprofessional hospice services and interorganizational care coordination for supporting the child and family at home. Finally, geography, concurrent care and hospice eligibility regulations, and funding and reimbursement mechanisms were associated with CBPPC use on a community and systemic level. CONCLUSION: Multilevel factors are associated with increased CBPPC use for children with LLIs or LTIs and their families in the U.S.
Authors: Erica C Kaye; Jonathan Jerkins; Courtney A Gushue; Samantha DeMarsh; April Sykes; Zhaohua Lu; Jennifer M Snaman; Lindsay Blazin; Liza-Marie Johnson; Deena R Levine; R Ray Morrison; Justin N Baker Journal: J Pain Symptom Manage Date: 2018-02-08 Impact factor: 3.612
Authors: Mary Lou Clark Fornehed; Radion Svynarenko; Jessica Keim-Malpass; Melanie J Cozad; Kerri A Qualls; Whitney L Stone; Lisa C Lindley Journal: South Med J Date: 2022-03 Impact factor: 0.954
Authors: Lisa C Lindley; Melanie J Cozad; Jennifer W Mack; Jessica Keim-Malpass; Radion Svynarenko; Pamela S Hinds Journal: Am J Hosp Palliat Care Date: 2021-12-04 Impact factor: 2.090
Authors: Julia Wager; Larissa Alice Kubek; Maria Brenner; Sara Calmanti; Carmel Doyle; Malin Lövgren; Ulrika Kreicbergs; Leontien Kremer; Philippe Le Moine; Guillaume Robert; Meggi Schuiling-Otten; Peter Schröder-Bäck; Eduard Verhagen; Boris Zernikow Journal: BMC Palliat Care Date: 2022-10-17 Impact factor: 3.113
Authors: Lisa C Lindley; Jessica Keim-Malpass; Radion Svynarenko; Melanie J Cozad; Jennifer W Mack; Pamela S Hinds Journal: J Hosp Palliat Nurs Date: 2020-06 Impact factor: 2.131