Continued social changes and contextual diversity are giving rise to new health needs. Key social components are becoming increasingly significant, adding to the psychosocial complexity that goes hand in hand with medical complexity. Paediatric palliative care is not immune to modern-day realities and it is influenced by social and political factors. Accordingly, it has become important to highlight the existence of social complexity factors when it comes to the assessment, social intervention and support of patients and families. The presence of the social worker in paediatric palliative care teams ensures that indicators of social complexity and protective factors may be identified, thereby making it possible to deliver comprehensive care. However, guaranteed recognition for social workers to be valued as members of the healthcare field remains a challenge.
Article
Social workers facing current high levels of social complexity in paediatric palliative care in Catalonia: are we prepared?
Barudy, Jorge, and Dantagnan, Maryorie. (2005). Los buenos tratos a la infancia, parentalidad, apego y resiliencia. Gedisa.
Barudy, Jorge, and Dantagnan, Maryorie. (2010). Los desafíos invisibles de ser madre o padre. Manual de evaluación de las competencias y la resiliencia parental. Gedisa.
Bergstraesser, Eva; Hain, Richard Dain, and Pereira, José. (2013). The development of an instrument that can identify children with palliative care needs: The Paediatric Palliative Screening Scale (PaPaS Scale): A qualitative study approach. BMC Palliative Care, 12(1), 20.
Borrell, Francesc. (2002). El modelo biopsicosocial en evolución. Med Clin, 119(5), 175-179. http://dx.doi.org/10.1016/S0025-7753(02)73355-1
Boyden, Jackelyn Y.; Hill, Douglas L.; Nye, Russell T.; Bona, Kira; Johnston, Emily E.; Hinds, Pamela; Friebert, Sarah; Kang, Tammy I.; Hays, Ross; Hall, Matt; Wolfe, Joanne, and Feudtner, Chris. (2022). Pediatric Palliative Care Parents’ Distress, Financial Difficulty, and Child Symptoms. Journal of Pain and Symptom Management, 63(2), 271-282. https://doi.org/10.1016/j.jpainsymman.2021.08.004
Carduff, Emma; Johnston, Sarah; Winstanley, Catherine; Morrish, Jamie; Murray, Scott A.; Spiller, Juliet, and Finucane, Anne. (2018). What does ‘complex’ mean in palliative care? Triangulating qualitative findings from 3 settings. BMC Palliative Care, 17(1), 12-27. https://doi.org/10.1186/s12904-017-0259-z
Chelazzi, Cosimo; Villa, Gianluca; Lanini, Iacopo; Romagnoli, Stefano, and Latronico, Nicola. (2023). The adult and pediatric palliative care: differences and shared issues. Journal of Anesthesia, Analgesia and Critical Care, 3(1). https://doi.org/10.1186/s44158-023-00085-8
Claramonte Fuster, Maria Àngels; González Merino, Rosa; Nadal Miquel, David; Pou Canales, Noemí, and Rams López, Sílvia. (2011). La intervención social en la enfermedad crónica infantil. Col·legi Oficial de Treball Social de Catalunya.
Cleveland, Ross; Ullrich, Christina; Slingsby, Brett, and Keefer, Patricia. (2021). Children at the Intersection of Pediatric Palliative Care and Child Maltreatment: A Vulnerable and Understudied Population. Journal of Pain and Symptom Management, 62(1), 91-97. https://doi.org/10.1016/j.jpainsymman.2020.11.007
Cyrulnik, Boris. (2002). Los patitos feos: La resiliencia, una infancia infeliz no determina la vida. Gedisa.
De Paul, Joaquín, and Arruabarrena, María Ignacia. (1987). El maltrato infantil: criterios para su definición y conceptualización. Revista de servicios sociales, 4. Zerbitzuan. https://www.zerbitzuan.net/documentos/zerbitzuan/Tratamiento%20para%20familias%20con%20maltratos.pdf
Fanjul, Gonzalo; Gálvez, Ismael, and Zuppiroli, Jennifer. (2021). Crecer sin papeles en España. Save the Children. Retrieved on 15 May 2020, from https://www.savethechildren.es/sites/default/files/2021-02/Crecer_sin_papeles_en_Espana_SC_PC.pdf
Generalitat de Catalunya. (s. d.). Maltractaments a la infància i l’adolescència. Canal Salut. Retrieved on14 July 2023, from https://canalsalut.gencat.cat/ca/salut-a-z/m/maltractaments-infancia-adolescencia/
Generalitat de Catalunya. (2020). Model organitzatiu d’atenció integral a la població infantil i juvenil amb necessitats pal·liatives i en situació de final de vida: Xarxa d’atenció pal·liativa pediàtrica integral. Scientia. Dipòsit d’Informació Digital del Departament de Salut. Retrieved on 26 March 2024, from https://scientiasalut.gencat.cat/bitstream/handle/11351/6120/model_organitzatiu_atencio_integral_poblacio_infantil_juvenil_amb_necessitats_paliatives_en_situacio_final_vida_2020_ca.pdf?sequence=1&isAllowed=y
Grau, Claudia, and Fernandez-Hawrylak, María. (2010). Familia y enfermedad crónica pediátrica. Anales del Sistema Sanitario de Navarra, 33(2), 203-212. https://doi.org/10.4321/S1137-66272010000300008
Hernández, Balma Soraya; Claramonte, Maria Àngels, and Nadal, David. (2016, maig). Diagnóstico social sanitario e intervención social en el final de la vida del paciente pediátrico. [Presentació de pòster]. XI Congreso Internacional de la Asociación Española de Cuidados Paliativos Pediátricos “Cuidados Paliativos, un derecho de todos”, Sevilla, España.
Hernández, Balma Soraya; Pellicer, Eduard, and Alonso, Ana María. (2022). Oportunidades y desafíos para el Trabajo Social sanitario en el desarrollo de la red de atención paliativa pediátrica integral (XAPPI) en Cataluña. Revista de Treball Social, 223, 123-138. https://doi.org/10.32061/RTS2022.223.06
Hodiamont, Farina; Jünger, Saskia; Leidl, Reiner; Maier, Bernd Oliver; Schildmann, Eva, and Bausewein, Claudia. (2019). Understanding complexity in palliative care situations: A conceptual framework based on a systematic review and narrative synthesis of qualitative research. BMC Health Services Research, 19(1), 157. https://doi.org/10.1186/s12913-019-3961-0
International Children’s Palliative Care Network. (2015). About CPC. Retrieved on 15 April 2024, from https://icpcn.org/about-cpc/
Jonas, Danielle ; Patneaude, Arika ; Purol, N. ; Scanlon, Caitlin, and Remke, Stacy. (2022). Defining Core Competencies and a Call to Action: Dissecting and Embracing the Crucial and Multifaceted Social Work Role. Pediatric Palliative Care. Journal of Pain and Symptom Management, 63(6), e739-e748. https://doi.org/10.1016/j.jpainsymman.2022.02.341
Jones, Lisa. (2012). Prevalence and risk of violence against children with disabilities. The Lancet, 380, 899-907. https://doi.org/10.1016/S0140-6736(12)60692-8
Knapp, Caprice; Madden, Vanessa; Curtis, Charlotte; Sloyer, Phyllis, and Shenkman, Elizabeth. (2010). Family Support in Pediatric Palliative Care: How Are Families Impacted by their Children’s Illnesses? Journal of Palliative Medicine, 13(4), 421-426. Research Gate. 10.1089/jpm.2009.0295
López, María Jesús; Orueta, Ramón; Gómez, Samuel; Sánchez, Arancha; Carmona, Javier, and Alonso, Francisco. (2009). El rol de cuidador de personas dependientes y sus repercusiones sobre la calidad de vida y la salud. Revista Clínica de Medicina de Familia, 2(7). Scielo. https://scielo.isciii.es/scielo.php?script=sci_arttext&pid=S1699-695X2009000200004
McCann, Damhnat; Bull, Rosalind, and Winzenberg, Tania. (2012) The daily patterns of time use for parents of children with complex needs. Journal of Child Health Care, 16, 26-52. http://dx.doi.org/10.1177/1367493511420186
Murali, Komal; Merriman, John; Yu, Gary; Vorderstrasse, Allison; Kelley, Amy, and Brody, Abraham. (2020). An adapted conceptual model integrating palliative care in serious illness and multiple chronic conditions. American Journal of Hospice and Palliative Medicine, 37(12), 1086-1095. https://doi.org/10.1177/1049909120928353
Navarro, Sergi. (2015). Aspectos éticos en la atención paliativa pediátrica. Bioètica i debat, 21(76), 8-12. Dialnet. https://dialnet.unirioja.es/servlet/articulo?codigo=6080769
Navarro, Sergi; Ortiz, Jessica, and Caritg, Josep. (2015). Estimación de los casos de muerte tributarios de cuidados paliativos pediátricos. Pediatria Catalana, 75(1), 8-12.
Organització Mundial de la Salut. (2007). Palliative care for children. Retrieved on 15 April 2024, from https://www.who.int/europe/news-room/fact-sheets/item/palliative-care-for-children
Panchón, Carme. (2006). Infància en situació de risc social. Presentació. Temps d’Educació, 31, 7-10.
Soriano, Francisco J. (2009). Promoción del buen trato y prevención del maltrato en la infancia en el ámbito de la Atención Primaria. Pediatría Atención Primaria, 11(41), 121-144. Scielo. https://scielo.isciii.es/scielo.php?script=sci_arttext&pid=S1139-76322009000100008
Spielman, Seth. (2020). Evaluating social vulnerability indicators: criteria and their application to the Social Vulnerability Index. Natural Hazards, 100(1), 417-436. https://doi.org/10.1007/s11069-019-03820-z
Sumser, Bridget; Remke, Stacy; Leimena, Meagan; Altilio, Terry, and Otis-Green, Shirley. (2015). The serendipitous survey: a look at primary and specialist palliative care social work practice, preparation and competence. Journal of Palliative Medicine, 18(10), 881-883. https://doi.org/10.1089/jpm.2015.0022
Wiener, Lori. (2013) Cultural and religious considerations in pediatric palliative care. Palliative Support Care, 11(1), 47-67. http://dx.doi.org/10.1017/S1478951511001027
Wilkinson, Richard, and Marmot, Michel (Ed.). (1998). The solid facts: Social determinants of health. World Health Organization.
