1. 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 study.
- Author
-
Namisango E, Bristowe K, Murtagh FE, Downing J, Powell RA, Abas M, Lohfeld L, Ali Z, Atieno M, Haufiku D, Guma S, Luyirika EB, Mwangi-Powell FN, Higginson IJ, and Harding R
- Subjects
- Adolescent, Africa South of the Sahara, Child, Child, Preschool, Cross-Sectional Studies, Female, Humans, Infant, Infant, Newborn, Interviews as Topic, Male, Qualitative Research, Self Report, Symptom Assessment, Patient-Centered Care, Quality of Health Care, Terminal Care
- Abstract
Background: 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., Aim: 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., Setting and Participants: Cross-sectional qualitative study in Kenya, Namibia, South Africa and Uganda. Children/caregivers of children aged 0-17 years 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., Results: A total of 120 interviews were conducted with children with life-limiting conditions ( n = 61; age range: 7-17 years), and where self-report was not possible, caregivers ( n = 59) of children (age range: 0-17) 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 - pain and s ymptom distress; psycho-social concerns - family and social relationships, ability to engage with age-appropriate activities (e.g. play, school attendance); existential concerns - worry about death, and loss of ambitions; health care quality - child- and adolescent-friendly services. Priority psycho-social concerns and health service factors varied by age., Conclusion: 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.
- Published
- 2020
- Full Text
- View/download PDF