{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,16]],"date-time":"2026-07-16T22:33:07Z","timestamp":1784241187805,"version":"3.55.0"},"reference-count":51,"publisher":"SAGE Publications","issue":"3","license":[{"start":{"date-parts":[[2020,2,21]],"date-time":"2020-02-21T00:00:00Z","timestamp":1582243200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Palliat Med"],"published-print":{"date-parts":[[2020,3]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>Paediatric life-limiting and life-threatening conditions (life-limiting conditions) place significant strain on children, families and health systems. Given high service use among this population, it is essential that care addresses their main symptoms and concerns.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Aim:<\/jats:title>\n                    <jats:p>This study aimed to identify the symptoms, concerns and other outcomes that matter to children with life-limiting conditions and their families in sub-Saharan Africa.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting and participants:<\/jats:title>\n                    <jats:p>Cross-sectional qualitative study in Kenya, Namibia, South Africa and Uganda. Children\/caregivers of children aged 0\u201317\u2009years with life-limiting conditions were purposively sampled by age, sex and diagnosis. Children aged 7 and above self-reported; caregiver proxies reported for children below 7 and those aged 7 and above unable to self-report.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>A total of 120 interviews were conducted with children with life-limiting conditions ( n\u2009=\u200961; age range: 7\u201317\u2009years), and where self-report was not possible, caregivers ( n\u2009=\u200959) of children (age range: 0\u201317) were included. Conditions included advanced HIV (22%), cancer (19%), heart disease (16%) endocrine, blood and immune disorders (13%), neurological conditions (12%), sickle cell anaemia (10%) and renal disease (8%). Outcomes identified included physical concerns \u2013 pain and symptom distress; psycho-social concerns \u2013 family and social relationships, ability to engage with age-appropriate activities (e.g. play, school attendance); existential concerns \u2013 worry about death, and loss of ambitions; health care quality \u2013 child- and adolescent-friendly services. Priority psycho-social concerns and health service factors varied by age.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>This study bridges an important knowledge gap regarding symptoms, concerns and outcomes that matter to children living with life-limiting conditions and their families and informs service development and evaluation.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/0269216319900137","type":"journal-article","created":{"date-parts":[[2020,2,21]],"date-time":"2020-02-21T08:09:11Z","timestamp":1582272551000},"page":"319-335","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":30,"title":["Towards person-centred quality care for children with life-limiting and life-threatening illness: Self-reported symptoms, concerns and priority outcomes from a multi-country qualitative 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