{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,1]],"date-time":"2026-02-01T08:46:59Z","timestamp":1769935619650,"version":"3.49.0"},"reference-count":36,"publisher":"Public Library of Science (PLoS)","issue":"1","license":[{"start":{"date-parts":[[2026,1,30]],"date-time":"2026-01-30T00:00:00Z","timestamp":1769731200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Palliative Care Association of Uganda"},{"name":"African Palliative Care Association"}],"content-domain":{"domain":["www.plosglobalpublichealth.org"],"crossmark-restriction":false},"short-container-title":["PLOS Glob Public Health"],"abstract":"<jats:p>Palliative care (PC) is crucial for children with cancer to alleviate suffering and enhance quality of life. However, continuity of pediatric palliative care (PPC) can be disrupted by factors such as lack of knowledge, stigma, bureaucratic hurdles, inadequate referral systems, and staffing shortages. There is limited data on the prevalence and factors associated with non-continuity of PPC in Uganda. This study explores the prevalence and factors contributing to non-continuity of PC among children with cancer in Uganda with Busoga Region in Eastern Uganda as a case study.This cross-sectional mixed-methods study was conducted at three facilities; two specialized tertiary facilities managing pediatric cancer and one Hospice Centre. Data were extracted from online databases for 307 children treated from 2019 to 2023, of whom 80 were alive during the study. A semi structured questionnaire was administered to caregivers of 77 children while nine key informant interviews were done with health workers from the three study sites. Descriptive statistics summarized data as proportions or percentages, and bivariate analysis used crude odds ratios to identify significant associations. Key informant interviews were transcribed and analysed thematically using the socio-ecological model. The prevalence of non-continuity of PC was 96.1% (95% CI: 88.4-98.0). All children who did not continue with PPC had received no referral to their nearest PPC provider. Barriers identified included: individual-level gaps in caregiver knowledge; relationship-level issues such as inappropriate cultural beliefs; health system-level challenges like limited human resources, inadequate training and funding, poor coordination and referral pathways, and service access issues; and policy-level concerns, including the lack of a national palliative care policy. The high prevalence of non-continuity of PC for children with cancer in Busoga highlights significant deficiencies in integrating palliative care into pediatric oncology services in Uganda. Addressing these challenges requires urgent government action to enhance palliative care funding and resources.<\/jats:p>","DOI":"10.1371\/journal.pgph.0004210","type":"journal-article","created":{"date-parts":[[2026,1,30]],"date-time":"2026-01-30T18:34:19Z","timestamp":1769798059000},"page":"e0004210","update-policy":"https:\/\/doi.org\/10.1371\/journal.pgph.corrections_policy","source":"Crossref","is-referenced-by-count":0,"title":["Paediatric palliative care following hospital discharge: Prevalence and factors associated with non-continuity of palliative care for children with cancer in Busoga sub-region-eastern Uganda; A mixed methods study"],"prefix":"10.1371","volume":"6","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4094-9256","authenticated-orcid":true,"given":"Miriam","family":"Ajambo","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7600-7722","authenticated-orcid":true,"given":"Savio","family":"Mwaka","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Joseph Gavin","family":"Nyanzi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1862-8109","authenticated-orcid":true,"given":"Damalie","family":"Nalwanga","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Joyce","family":"Balagadde","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Joseph","family":"Rujumba","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"340","published-online":{"date-parts":[[2026,1,30]]},"reference":[{"issue":"8","key":"pgph.0004210.ref001","doi-asserted-by":"crossref","first-page":"1612","DOI":"10.1177\/02692163211026171","article-title":"Organizational and individual barriers and facilitators to the integration of pediatric palliative care for children: a grounded theory study","volume":"35","author":"A Laronne","year":"2021","journal-title":"Palliat Med"},{"issue":"2","key":"pgph.0004210.ref002","first-page":"27","article-title":"Paediatric palliative care in resource-poor countries","volume":"5","author":"J Downing","year":"2018","journal-title":"Children (Basel)"},{"key":"pgph.0004210.ref003","unstructured":"Becker FG. Integrated palliative care and symptom relief into paediatics. 2015;7(1)."},{"key":"pgph.0004210.ref004","article-title":"Presentation and outcomes of childhood cancer patients at Uganda cancer institute","volume":"6","author":"I Mutyaba","year":"2019","journal-title":"Glob Pediatr Health"},{"issue":"1","key":"pgph.0004210.ref005","doi-asserted-by":"crossref","first-page":"59","DOI":"10.1186\/s12904-021-00751-0","article-title":"Continuity in palliative care - analysis of intersectoral palliative care based on routine data of a statutory health insurance","volume":"20","author":"L Rehner","year":"2021","journal-title":"BMC Palliat Care"},{"key":"pgph.0004210.ref006","unstructured":"RHHJ. Annual report 2021 rays of hope hospice Jinja. 2021."},{"key":"pgph.0004210.ref007","first-page":"153","article-title":"Information booklet for villagers.","volume-title":"Buying and selling the environment","author":"UCI","year":"2019"},{"issue":"4","key":"pgph.0004210.ref008","doi-asserted-by":"crossref","first-page":"307","DOI":"10.1055\/s-0037-1608702","article-title":"The role of palliative care in oncology","volume":"34","author":"R Agarwal","year":"2017","journal-title":"Semin Intervent Radiol"},{"issue":"1","key":"pgph.0004210.ref009","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1002\/cam4.1907","article-title":"Palliative care initiation in pediatric oncology patients: a systematic review","volume":"8","author":"BT Cheng","year":"2019","journal-title":"Cancer Med"},{"issue":"3","key":"pgph.0004210.ref010","first-page":"36","article-title":"\u0395\u03b9\u03c3\u03b1\u03b3\u03c9\u03b3\u03ae \u03a3\u03c4\u03b7 \u03a3\u03c5\u03c3\u03c4\u03b7\u03bc\u03b1\u03c4\u03b9\u03ba\u03ae \u0391\u03bd\u03b1\u03c3\u03ba\u03cc\u03c0\u03b7\u03c3\u03b7 (Systematic Review) \u03a3\u03c4\u03b9\u03c2 \u0395\u03c0\u03b9\u03c3\u03c4\u03ae\u03bc\u03b5\u03c2 \u03a5\u03b3\u03b5\u03af\u03b1\u03c2 \u03a4\u03b9 \u0395\u03af\u03bd\u03b1\u03b9 \u03a3\u03c5\u03c3\u03c4\u03b7\u03bc\u03b1\u03c4\u03b9\u03ba\u03ae \u0391\u03bd\u03b1\u03c3\u03ba\u03cc\u03c0\u03b7\u03c3\u03b7 (Systematic Review)","volume":"94","author":"M Klabunde","year":"2017","journal-title":"J Psychiatr Res"},{"issue":"1","key":"pgph.0004210.ref011","doi-asserted-by":"crossref","first-page":"271","DOI":"10.1186\/s12885-021-08014-0","article-title":"Prevalence of childhood cancer among children attending referral hospitals of outpatient department in Ethiopia","volume":"21","author":"A Endalamaw","year":"2021","journal-title":"BMC Cancer"},{"issue":"5","key":"pgph.0004210.ref012","doi-asserted-by":"crossref","DOI":"10.1016\/j.jpainsymman.2021.12.031","article-title":"International standards for pediatric palliative care: from IMPaCCT to GO-PPaCS","volume":"63","author":"F Benini","year":"2022","journal-title":"J Pain Symptom Manage"},{"issue":"4","key":"pgph.0004210.ref013","doi-asserted-by":"crossref","first-page":"754","DOI":"10.1016\/j.jpainsymman.2020.04.027","article-title":"Redefining palliative care-a new consensus-based definition","volume":"60","author":"L Radbruch","year":"2020","journal-title":"J Pain Symptom Manage"},{"issue":"1","key":"pgph.0004210.ref014","doi-asserted-by":"crossref","first-page":"55","DOI":"10.1186\/s12904-022-00930-7","article-title":"Palliative care in Uganda: quantitative descriptive study of key palliative care indicators 2018-2020","volume":"21","author":"A Kagarmanova","year":"2022","journal-title":"BMC Palliat Care"},{"key":"pgph.0004210.ref015","first-page":"23","article-title":"National population and housing census 2024: Busoga sub region profile","volume":"256","author":"UBOS","year":"2025","journal-title":"Natl Popul Househ Census"},{"issue":"11","key":"pgph.0004210.ref016","doi-asserted-by":"crossref","DOI":"10.2106\/00004623-199311000-00002","article-title":"A self-administered questionnaire for the assessment of severity of symptoms and functional status in carpal tunnel syndrome","volume":"75","author":"DW Levine","year":"1993","journal-title":"JBJS"},{"issue":"1","key":"pgph.0004210.ref017","doi-asserted-by":"crossref","first-page":"219","DOI":"10.1186\/s12879-020-4928-9","article-title":"Rubella IgM epidemiology in the pre-rubella vaccination era in Uganda","volume":"20","author":"F Bagenda","year":"2020","journal-title":"BMC Infect Dis"},{"issue":"1","key":"pgph.0004210.ref018","doi-asserted-by":"crossref","first-page":"55","DOI":"10.1186\/s12904-020-00558-5","article-title":"Challenges on the provision of palliative care for patients with cancer in low- and middle-income countries: a systematic review of reviews","volume":"19","author":"H Abu-Odah","year":"2020","journal-title":"BMC Palliat Care"},{"key":"pgph.0004210.ref019","doi-asserted-by":"crossref","first-page":"3","DOI":"10.4103\/IJPC.IJPC_355_20","article-title":"Barriers to the provision and utilization of palliative care in Africa: a rapid scoping review","author":"DA Agom","year":"2021","journal-title":"Indian J Palliat Care"},{"issue":"1","key":"pgph.0004210.ref020","doi-asserted-by":"crossref","first-page":"57","DOI":"10.1186\/s12904-023-01181-w","article-title":"Barrier analysis for continuity of palliative care from health facility to household among adult cancer patients in Addis Ababa, Ethiopia","volume":"22","author":"Y Abate","year":"2023","journal-title":"BMC Palliat Care"},{"key":"pgph.0004210.ref021","first-page":"1178224216688887","article-title":"Barriers to access to palliative care","volume":"10","author":"P Hawley","year":"2017","journal-title":"Palliat Care"},{"issue":"14","key":"pgph.0004210.ref022","doi-asserted-by":"crossref","first-page":"3330","DOI":"10.1002\/cncr.32901","article-title":"The impact of childhood cancer on parental separation, divorce, and family planning in Denmark","volume":"126","author":"L Mader","year":"2020","journal-title":"Cancer"},{"issue":"1","key":"pgph.0004210.ref023","doi-asserted-by":"crossref","DOI":"10.4172\/2472-128X.1000137","article-title":"The impact of parental separation and divorce on the health status of children, and the ways to improve it","volume":"4","author":"M Haimi","year":"2016","journal-title":"J Clin Med Genomics"},{"issue":"1","key":"pgph.0004210.ref024","doi-asserted-by":"crossref","first-page":"178","DOI":"10.1186\/s12904-021-00871-7","article-title":"Challenges of paediatric palliative care in Romania: a focus groups study","volume":"20","author":"N Pacurari","year":"2021","journal-title":"BMC Palliat Care"},{"key":"pgph.0004210.ref025","author":"R Wangui","year":"2021"},{"key":"pgph.0004210.ref026","unstructured":"Ministry of Health Rwanda. Republic of Rwanda Rwanda National palliative care policy. 2011."},{"issue":"1","key":"pgph.0004210.ref027","doi-asserted-by":"crossref","first-page":"18","DOI":"10.1080\/09699260.2022.2074126","article-title":"Facilitators of and barriers to continuity with GPs in primary palliative cancer care: a mixed-methods systematic review","volume":"31","author":"E Couchman","year":"2022","journal-title":"Prog Palliat Care"},{"issue":"5","key":"pgph.0004210.ref028","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2018-027323","article-title":"Impact of informational and relational continuity for people with palliative care needs: a mixed methods rapid review","volume":"9","author":"BF Hudson","year":"2019","journal-title":"BMJ Open"},{"issue":"5","key":"pgph.0004210.ref029","first-page":"608","article-title":"Development of the Readiness for Home-Based Palliative Care Scale (RHBPCS) for primary family caregivers","volume":"9","author":"M-P Wu","year":"2021","journal-title":"Healthcare (Basel)"},{"issue":"3","key":"pgph.0004210.ref030","doi-asserted-by":"crossref","first-page":"191","DOI":"10.1177\/1049909106298393","article-title":"Partners in pediatric palliative care: a program to enhance collaboration between hospital and community palliative care services","volume":"24","author":"JM Carroll","year":"2007","journal-title":"Am J Hosp Palliat Care"},{"key":"pgph.0004210.ref031","doi-asserted-by":"crossref","first-page":"11786329231162996","DOI":"10.1177\/11786329231162996","article-title":"Developing community-based palliative care for children: a community case study from an urban informal settlement in Bangladesh","volume":"16","author":"MK Chowdhury","year":"2023","journal-title":"Health Serv Insights"},{"issue":"2","key":"pgph.0004210.ref032","first-page":"26","article-title":"Palliative care for children in hospital: essential roles","volume":"5","author":"R Drake","year":"2018","journal-title":"Children (Basel)"},{"issue":"4","key":"pgph.0004210.ref033","first-page":"316","article-title":"Pediatric palliative care in the community","volume":"65","author":"EC Kaye","year":"2015","journal-title":"CA Cancer J Clin"},{"issue":"5","key":"pgph.0004210.ref034","first-page":"221","article-title":"Enhancing the effectiveness of follow-up phone calls to improve transitions in care: three decision points","volume":"39","author":"MB Johnson","year":"2013","journal-title":"Jt Comm J Qual Patient Saf"},{"issue":"3","key":"pgph.0004210.ref035","doi-asserted-by":"crossref","first-page":"616","DOI":"10.1111\/bcp.13839","article-title":"Ensuring continuity of patient care across the healthcare interface: telephone follow-up post-hospitalization","volume":"85","author":"M Odeh","year":"2019","journal-title":"Br J Clin Pharmacol"},{"key":"pgph.0004210.ref036","volume-title":"Planning and implementing palliative care services: a guide for programme managers","author":"Word Health Organization","year":"2015"}],"container-title":["PLOS Global Public Health"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pgph.0004210","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,1,30]],"date-time":"2026-01-30T18:34:24Z","timestamp":1769798064000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pgph.0004210"}},"subtitle":[],"editor":[{"given":"Hani","family":"Mowafi","sequence":"first","affiliation":[],"role":[{"role":"editor","vocabulary":"crossref"}]}],"short-title":[],"issued":{"date-parts":[[2026,1,30]]},"references-count":36,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2026,1,30]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pgph.0004210","relation":{},"ISSN":["2767-3375"],"issn-type":[{"value":"2767-3375","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,1,30]]}}}