Enabling Children and Young People to Take Patient and Public Involvement Roles in Paediatric Palliative Care Research
Child; Adolescent; Female; Male; Clinical; Palliative therapy; Conference abstract; Outcome assessment
Background/aims: Patient and public involvement (PPI) is essential to design and deliver meaningful research, but evidence on how to involve children and young people (CYP) in palliative care studies is limited. We aim to develop strategies to engage CYP PPI in paediatric palliative care (PPC) research.
Coombes L; Roach A; Leyden D; Scott H; Braybrook D; Harardottir D; Ellis-Smith C; Bristowe K; Harding R
Palliative Medicine
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">10.1177/02692163221093145</a>
Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes
Embase; PsycINFO; outcome assessment; health care personnel; Scopus; systematic review; precancer; human; article; child; female; male; palliative therapy; Cinahl; Medline; developing country; high income country; ScienceDirect
Background: The design and provision of quality pediatric palliative care should prioritize issues that matter to children and their families for optimal outcomes. Objective: 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. Method: 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. Results: 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. Conclusion: 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.
Namisango E; Bristowe K; Allsop MJ; Murtagh FEM; Abas M; Higginson IJ; Downing J; Harding R
Patient
2018
<a href="http://doi.org/10.1007/s40271-018-0333-5" target="_blank" rel="noreferrer noopener">10.1007/s40271-018-0333-5</a>
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
children; concerns; outcomes; paediatrics; palliative care; Symptoms
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.
Namisango E; Bristowe K; Murtagh F E; Downing J; Powell R A; Abas M; Lohfeld L; Ali Z; Atieno M; Haufiku D; Guma S; Luyirika E B; Mwangi-Powell F N; Higginson I J; Harding R
Palliative Medicine
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0269216319900137" target="_blank" rel="noreferrer noopener">10.1177/0269216319900137</a>
Challenges and Incentives for Integrating Person-Centred Outcome Measures Into Routine Paediatric Palliative Care: Health, Social Care and Commissioner Perspectives
Child; Palliative therapy; Conference abstract; Semi-structured interview; Outcome assessment; Care behavior; Genetic transcription; Social care
Background/aims: To successfully integrate a newly developed measure into clinical practice, the challenges and incentives for implementation must be understood, and these are specific to each measure. Previous research has focused on disease-specific measures, or the use of outcome measures in adult palliative care. Evidence is needed to ensure successful integration of new person-centred outcome measures (PCOMs) in the paediatric palliative care context.
Scott H; Coombes L; Braybrook D; Roach A; Harardottir D; Bristowe K; Ellis-Smith C; Chambers L; Bluebond-Langner M; Farsides B; Murtagh F; Harding R
Palliative Medicine
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">10.1177/02692163221093145</a>