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5. International consensus on sleep problems in pediatric palliative care: Paving the way

Author

Li, Albert, Wolfson, Amy R., Marinetto, Anna, Santini, Anna, Zanin, Anna, Kuhn, Brett R., Angelhoff, Charlotte, Santos, Cristiane Fumo dos, Goh, Daniel Y.T., Verrillo, Elisabetta, Zhou, Eric S., Ferreira, Esther Angélica Luiz, Bergstraesser, Eva, Pizza, Fabio, Nilsson, Frans, Plazzi, Giuseppe, Wang, Guanghai, Traslaviña, Guillermo Andrey Ariza, Moreira, Gustavo Antonio, Siden, Hal, Hauch, Holger, Huijer, Huda Abu-Saad, Catalano, Igor, Narang, Indra, Avagnina, Irene, Lopez, Jaime Gutierrez Del Alamo, Wille, Joakim, Mindell, Jodi, Bogetz, Jori, Downing, Julia, Hauer, Julie, Streuli, Jürg, Baker, Justin, Spruyt, Karen, Chan, Kate Ching Ching, Soster, Leticia Azevedo, Oliveira, Lia, Ragsdale, Lindsay, Nobili, Lino, Matlen, Lisa, Nosetti, Luana, De Zen, Lucia, Strambi, Luigi Ferini, Stenmarker, Margaretha, Lopes, Maria Cecilia, Blankenburg, Markus, Rios, Marta, Bernadá, Mercedes, Farquhar, Michael, Frühwald, Michael, Gradisar, Michael, Simakajornboon, Narong, Lazzarin, Pierina, Chong, Poh-Heng, Ferri, Raffaele, Martino-Alba, Ricardo, Findling, Robert L., Ferreira, Rosário, Bin-Hasan, Saadoun, Kudchadkar, Sapna R., Mercadante, Sebastiano, Amarri, Sergio, Keenan, Sharon, Noce, Silvia, de Oliveira Iglesias, Simone Brasil, Fagondes, Simone, Suh, Sooyeon, Sheldon, Stephen H., Sejersen, Thomas, Ceranoglu, Tolga Atilla, Crabtree, Valerie, Castronovo, Vincenza, Mercante, Anna, Owens, Judith, Bruni, Oliviero, Nunes, Magda L., Gringras, Paul, Li, Shirley Xin, Papa, Simonetta, Kreicbergs, Ulrika, Wolfe, Joanne, Zernikow, Boris, Lacerda, Ana, and Benini, Franca

Published
2024
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24. Household material hardship and distress among parents of children with advanced cancer: A report from the PediQUEST Response trial

Author

Eche‐Ugwu, Ijeoma Julie, primary, Orellana, Liliana, additional, Becker, Denise, additional, Bona, Kira, additional, Avery, Madeline, additional, Feudtner, Chris, additional, Freedman, Jason L., additional, Kang, Tammy I., additional, Rosenberg, Abby R., additional, Waldman, Elisha D., additional, Ullrich, Christina K., additional, Dussel, Veronica, additional, and Wolfe, Joanne, additional

Published
2024
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25. International consensus on sleep problems in pediatric palliative care: paving the way

Author

MERCANTE, Anna, primary, OWENS, Judith, additional, BRUNI, Oliviero, additional, NUNES, Magda L., additional, GRINGRAS, Paul, additional, LI, Shirley Xin, additional, PAPA, Simonetta, additional, KREICBERGS, Ulrika, additional, WOLFE, Joanne, additional, ZERNIKOW, Boris, additional, LACERDA, Ana, additional, BENINI, Franca, additional, Li, Albert, additional, Wolfson, Amy R., additional, Marinetto, Anna, additional, Santini, Anna, additional, Zanin, Anna, additional, Kuhn, Brett R., additional, Angelhoff, Charlotte, additional, Santos, Cristiane Fumo dos, additional, Goh, Daniel YT., additional, Verrillo, Elisabetta, additional, Zhou, Eric S., additional, Ferreira, Esther Angélica Luiz, additional, Bergstraesser, Eva, additional, Pizza, Fabio, additional, Nilsson, Frans, additional, Plazzi, Giuseppe, additional, Wang, Guanghai, additional, Traslaviña, Guillermo Andrey Ariza, additional, Moreira, Gustavo Antonio, additional, Siden, Hal, additional, Hauch, Holger, additional, Huijer, Huda Abu-Saad, additional, Catalano, Igor, additional, Narang, Indra, additional, Avagnina, Irene, additional, Lopez, Jaime Gutierrez Del Alamo, additional, Wille, Joakim, additional, Mindell, Jodi, additional, Bogetz, Jori, additional, Downing, Julia, additional, Hauer, Julie, additional, Streuli, Jürg, additional, Baker, Justin, additional, Spruyt, Karen, additional, Chan, Kate Ching Ching, additional, Soster, Leticia Azevedo, additional, Oliveira, Lia, additional, Ragsdale, Lindsay, additional, Nobili, Lino, additional, Matlen, Lisa, additional, Nosetti, Luana, additional, De Zen, Lucia, additional, Strambi, Luigi Ferini, additional, Stenmarker, Margaretha, additional, Lopes, Maria Cecilia, additional, Blankenburg, Markus, additional, Rios, Marta, additional, Bernadá, Mercedes, additional, Farquhar, Michael, additional, Frühwald, Michael, additional, Gradisar, Michael, additional, Simakajornboon, Narong, additional, Lazzarin, Pierina, additional, Chong, Poh-Heng, additional, Ferri, Raffaele, additional, Martino-Alba, Ricardo, additional, Findling, Robert L., additional, Ferreira, Rosário, additional, Bin-Hasan, Saadoun, additional, Kudchadka, Sapna, additional, Mercadante, Sebastiano, additional, Amarri, Sergio, additional, Keenan, Sharon, additional, Noce, Silvia, additional, de Oliveira Iglesias, Simone Brasil, additional, Fagondes, Simone, additional, Suh, Sooyeon, additional, Sheldon, Stephen H., additional, Sejersen, Thomas, additional, Ceranoglu, Tolga Atilla, additional, Crabtree, Valerie, additional, and Castronovo, Vincenza, additional

Published
2024
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32. Family characteristics and childcare patterns associated with early social functioning in cancer‐bereaved parents.

Author

Snaman, Jennifer M., Chen, Li, Mazzola, Emanuele, Helton, Gabrielle, Feifer, Deborah, Broden, Elizabeth, McCarthy, Sarah, Rosenberg, Abby R., Baker, Justin N., and Wolfe, Joanne

Subjects
SOCIAL skills, PARENTS, PSYCHOLOGICAL distress, CHILD care, CHILD death
Abstract

Background: Bereaved parents experience life‐long grief after the death of their child from cancer. Parents who can integrate their grief and maintain their social functioning early in bereavement, even in the setting of concurrent psychosocial distress, have improved outcomes. Identifying the factors associated with bereaved parents' early social functioning can guide future supportive interventions. Methods: The authors surveyed parents of children who died from cancer at two large centers 6–24 months after death, assessing bereavement experiences using validated and pilot tested tools. Univariable and multivariable logistical regression models were used to examine which family and child demographic, treatment, and end‐of‐life (EOL) factors were associated with maintained parental social functioning (T scores ≥40 on the Patient‐Reported Outcomes Measurement Information System Ability to Participate in Social Roles and Activities‐Short Form questionnaire). Results: One hundred twenty‐eight parents of 88 children participated (38% household response rate); most parents identified as female (63%) and White (88%). Parents' median age was 47 years (interquartile range, 10 years); and the median time from the child's death to survey completion was 13 months (interquartile range, 10 months). In multivariate modeling, parents without household material hardship and those who felt prepared for EOL circumstances had increased odds of maintained social functioning (odds ratio, 4.7 [95% confidence interval, 1.6–13.7; p <.004] and 5.5 [95% confidence interval, 1.9–15.9; p <.002], respectively). Conclusions: Parents who felt prepared for their child's EOL and those without household material hardship were more likely to have maintained social functioning in the first 2 years after their child's death. Interventions targeting EOL preparedness and alleviating household material hardship may improve bereavement outcomes. Bereaved parents' ability to integrate their grief and continue to function socially is an important measure of overall well‐being early in bereavement. In this dual‐site, survey‐based study of 128 parents of children who died from cancer within the previous 2 years, the authors observed that preparation for end‐of‐life circumstances and the absence of household material hardship were associated with maintained parental social functioning. [ABSTRACT FROM AUTHOR]

Published
2024
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41. Improving family grief outcomes:A scoping review of family-based interventions before and after the death of a child

Author

Høeg, Beverley Lim, Guldin, Mai-Britt, Høgh, Julie, Volkmann, Johanne Esther, Wolfe, Joanne, Larsen, Hanne Bækgaard, Bidstrup, Pernille Envold, Høeg, Beverley Lim, Guldin, Mai-Britt, Høgh, Julie, Volkmann, Johanne Esther, Wolfe, Joanne, Larsen, Hanne Bækgaard, and Bidstrup, Pernille Envold

Abstract

Background: Experiencing the illness and death of a child is a traumatic experience for the parents and the child’s siblings. However, knowledge regarding effective grief interventions targeting the whole family is limited, including how to integrate age-appropriate support for siblings. Aim: We aimed to synthesize the empirical literature regarding grief interventions that target the whole family before and/or after the death of a child. Design: A scoping review following the Joanna Briggs Institute and Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines. Data sources: We searched PubMed, PsycINFO, Embase, CINAHL, and Scopus covering January 1998–May 2022. We included studies describing any type of structured intervention targeting the whole family (i.e. parents and siblings) before or/and after the death of a child (below 18 years), with pre-post assessments of grief-related symptoms in the family as an outcome. Results: After removal of duplicates, we screened the titles and abstracts of 4078 publications and identified 30 publications for full-text screening. None of the studies met the inclusion criteria. Most of the studies were excluded because they either did not target the whole family or did not target families who had lost a child below 18 years. Bereavement camps were a popular form of family intervention, but none were evaluated in a pre-post design. No grief interventions offering support pre-death were found. Conclusions: There is great need for research to improve bereavement outcomes for the entire family and to potentially integrate this in pediatric palliative care., Background: Experiencing the illness and death of a child is a traumatic experience for the parents and the child’s siblings. However, knowledge regarding effective grief interventions targeting the whole family is limited, including how to integrate age-appropriate support for siblings. Aim: We aimed to synthesize the empirical literature regarding grief interventions that target the whole family before and/or after the death of a child. Design: A scoping review following the Joanna Briggs Institute and Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines. Data sources: We searched PubMed, PsycINFO, Embase, CINAHL, and Scopus covering January 1998–May 2022. We included studies describing any type of structured intervention targeting the whole family (i.e. parents and siblings) before or/and after the death of a child (below 18 years), with pre-post assessments of grief-related symptoms in the family as an outcome. Results: After removal of duplicates, we screened the titles and abstracts of 4078 publications and identified 30 publications for full-text screening. None of the studies met the inclusion criteria. Most of the studies were excluded because they either did not target the whole family or did not target families who had lost a child below 18 years. Bereavement camps were a popular form of family intervention, but none were evaluated in a pre-post design. No grief interventions offering support pre-death were found. Conclusions: There is great need for research to improve bereavement outcomes for the entire family and to potentially integrate this in pediatric palliative care.

Published
2024

47. Inequitable Poverty Exposures: A Subspecialty Opportunity to Address Disparities

Author

Karvonen, Kristine A., primary, Umaretiya, Puja J., additional, Koch, Victoria B., additional, Flamand, Yael, additional, Aziz-Bose, Rahela, additional, Ilcisin, Lenka, additional, Valenzuela, Ariana, additional, Cole, Peter D., additional, Gennarini, Lisa M., additional, Kahn, Justine M., additional, Kelly, Kara M., additional, Tran, Thai Hoa, additional, Michon, Bruno, additional, Welch, Jennifer J.G., additional, Wolfe, Joanne, additional, Silverman, Lewis B., additional, Rosenberg, Abby R., additional, and Bona, Kira, additional

Published
2024
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