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

被引：22

作者：

Namisango, Eve ^{[1
,2
]}

Bristowe, Katherine ^{[2
]}

Murtagh, Fliss E. M. ^{[2
,3
]}

Downing, Julia ^{[2
,4
,5
]}

Powell, Richard A. ^{[6
]}

Abas, Melanie ^{[7
]}

Lohfeld, Lynne ^{[8
]}

Ali, Zipporah ^{[9
]}

Atieno, Mackuline ^{[1
]}

Haufiku, Desiderius ^{[10
]}

Guma, Samuel ^{[11
]}

Luyirika, Emmanuel B. K. ^{[1
]}

Mwangi-Powell, Faith N. ^{[6
]}

Higginson, Irene J. ^{[2
]}

Harding, Richard ^{[2
]}

机构：

[1] African Palliat Care Assoc, POB 72518,Plot 850,Dr Gibbons Rd, Kampala, Uganda

[2] Kings Coll London, Cicely Saunders Inst Palliat Care Policy & Rehabi, London, England

[3] Hull York Med Sch, Wolfson Palliat Care Res Ctr, Kingston Upon Hull, N Humberside, England

[4] Int Childrens Palliat Care Network, Assagay, South Africa

[5] Makerere Univ, Palliat Care Unit, Kampala, Uganda

[6] MWAPO Hlth Dev Grp, Nairobi, Kenya

[7] Kings Coll London, Inst Psychiat Psychol & Neurosci, Hlth Serv & Populat Res Dept, London, England

[8] Queens Univ Belfast, Ctr Publ Hlth, Belfast, Antrim, North Ireland

[9] Kenya Hosp & Palliat Care Assoc, Nairobi, Kenya

[10] Univ Namibia, Sch Publ Hlth, Windhoek, Namibia

[11] Kawempe Home Care, Kampala, Uganda

来源：

PALLIATIVE MEDICINE | 2020年 / 34卷 / 03期

关键词：

Symptoms; concerns; outcomes; children; palliative care; paediatrics; PEDIATRIC PALLIATIVE CARE; OF-LIFE; ADOLESCENTS; CANCER; NEED; INSTRUMENTS; ADULT;

D O I：

10.1177/0269216319900137

中图分类号：

R19 [保健组织与事业（卫生事业管理）];

学科分类号：

摘要：

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 symptom 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.

引用

页码：319 / 335

页数：17

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