| Autor: |
Wolfe, Joanne, Bluebond-Langner, Myra, Namisango, Eve, Bristowe, Katherine, Murtagh, Fliss EM, Downing, Julia, Powell, Richard A, Abas, Melanie, Lohfeld, Lynne, Ali, Zipporah, Atieno, Mackuline, Haufiku, Desiderius, Guma, Samuel, Luyirika, Emmanuel BK, Mwangi-Powell, Faith N, Higginson, Irene J, Harding, Richard |
| Předmět: |
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| Zdroj: |
Palliative Medicine; Mar2020, Vol. 34 Issue 3, p319-335, 17p, 4 Charts |
| Abstrakt: |
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. [ABSTRACT FROM AUTHOR] |
| Databáze: |
Complementary Index |
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