Browsing by Author "Bristowe, Katherine"

Now showing 1 - 2 of 2
  • Thumbnail Image
    Item
    Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcome
    (The Patient-Patient-Centered Outcomes Research, 2019) Namisango, Eve; Bristowe, Katherine; Allsop, Matthew J.; Abas, Melanie; Higginson, Irene J.; Downing, Julia; Harding, Richard
    The design and provision of quality pediatric palliative care should prioritize issues that matter to children and their families for optimal outcomes.This review aims to identify symptoms, concerns and outcomes that matter to children and young people (“young people”) with terminal illnesses and their families. Findings from the systematic review will inform the development of a relevant framework of health outcomes.This is a systematic literature review across multiple databases for identification of eligible primary evidence. Data sources included PsycINFO, MEDLINE, Embase, CINAHL, OpenGrey, and Science Direct Journals, searched from 1 August 2016 to 30 July 2017. The study also incorporates consultations with experts in the field, citation searches via Scopus, and a hand search of reference lists of included studies.Of the 13,567 articles that were evaluated, 81 studies were included. Most of these studies (n = 68) were from high-income countries and foused on young people with cancer (n = 58). A total of 3236 young people, 2103 family carers, 108 families, and 901 healthcare providers were included in the studies. Young people did not contribute to data in 30% of studies. Themes on priority concerns are presented by the following domains and health outcomes: (1) physical (n = 62 studies), e.g., physical symptoms; (2) psychological (n = 65), e.g., worry; (3) psychosocial (n = 31), e.g., relationships; (4) existential (n = 37), e.g., existential loss; and (5) “other” (n = 39), e.g., information access.Burdensome symptoms and concerns affect young people with malignant and nonmalignant conditions and occur across the disease trajectory; pediatric palliative care should not be limited to the end-of-life phase. A child–family-centered framework of health outcomes, spanning the patient, family, and quality of service levels is proposed to inform service development. Future research should address gaps identified across the literature (i.e., the involvement of young people in research, evidence for developing countries, and a focus on nonmalignant conditions.
  • Thumbnail Image
    Item
    Towards Person-Centered Quality Care for Children with Life-Limiting and Life Threatening Illness: Self-Reported Symptoms, Concerns and Priority Outcomes from a Multi-Country Qualitative Study
    (Palliative Medicine, 2020) Namisango, Eve; Bristowe, Katherine; Mwangi-Powell, Faith N.; Higginson, Irene J.; Harding, Richard
    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.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.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.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.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.