Dataset Information

Child/youth, family and public engagement in paediatric services in high-income countries: A systematic scoping review.

ABSTRACT: BACKGROUND:Patient and public engagement in paediatric health-care decision making is under-researched, and there is a lack of systematically reviewed literature in this area. OBJECTIVE:To examine the extent, range and nature of published research investigating the engagement of children/youth, families and the public in paediatric service improvement, to summarize key aspects of the research identified and to identify gaps to help inform future research needs. METHODS:Literature was sought in MEDLINE, EMBASE, PsycINFO and CINAHL. Eligible articles presented research focused on patient, family and public engagement strategies in the paediatric health-care setting. Two reviewers extracted and charted data and analysed findings using a descriptive numerical summary analysis and a thematic analysis. RESULTS:From 4331 articles, 21 were eligible. Most were from the United States. The majority of studies were undertaken in hospital settings and used quantitative methods. Various patient and public engagement strategies/interventions were examined, including shared decision-making tools, questionnaires, youth councils/family advisory groups, patient portals and online networks. Most of the studies examined child/youth/parent satisfaction, with fewer investigating treatment outcomes or service improvement. The majority of studies investigated an engagement strategy at the 'individual treatment' level of engagement. Regarding the continuum of engagement, most of the studies were at either the 'consultation' or 'involvement' stage. CONCLUSION:Future research needs to focus on the investigation of engagement strategies delivered in primary care, and the use of more qualitative and mixed methods approaches is recommended. There is a gap in the area of engagement strategies directed towards 'service design and resources' and 'macro/policy' levels.

SUBMITTER: Gurung G

PROVIDER: S-EPMC7104655 | biostudies-literature | 2020 Apr

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Child/youth, family and public engagement in paediatric services in high-income countries: A systematic scoping review.

Gurung Gagan G Richardson Amy A Wyeth Emma E Edmonds Liza L Derrett Sarah S

Health expectations : an international journal of public participation in health care and health policy 20200124 2

<h4>Background</h4>Patient and public engagement in paediatric health-care decision making is under-researched, and there is a lack of systematically reviewed literature in this area.<h4>Objective</h4>To examine the extent, range and nature of published research investigating the engagement of children/youth, families and the public in paediatric service improvement, to summarize key aspects of the research identified and to identify gaps to help inform future research needs.<h4>Methods</h4>Lite ...[more]

PMID: 31981295

Similar Datasets

Project description:BackgroundDemographic and epidemiological changes have prompted thinking on the need to broaden the child health agenda to include care for complex and chronic conditions in the 0-19 years (paediatric) age range. Providing such services will be undermined by general and skilled paediatric workforce shortages especially in low- and middle-income countries (LMICs). In this paper, we aim to understand existing, sanctioned forms of task-sharing to support the delivery of care for more complex and chronic paediatric and child health conditions in LMICs and emerging opportunities for task-sharing. We specifically focus on conditions other than acute infectious diseases and malnutrition that are historically shifted.MethodsWe (1) reviewed the Global Burden of Diseases study to understand which conditions may need to be prioritized; (2) investigated training opportunities and national policies related to task-sharing (current practice) in five purposefully selected African countries (Kenya, Uganda, Tanzania, Malawi and South Africa); and (3) summarized reported experience of task-sharing and paediatric and child health service delivery through a scoping review of research literature in LMICs published between 1990 and 2019 using MEDLINE, Embase, Global Health, PsycINFO, CINAHL and the Cochrane Library.ResultsWe found that while some training opportunities nominally support emerging roles for non-physician clinicians and nurses, formal scopes of practices often remain rather restricted and neither training nor policy seems well aligned with probable needs from high-burden complex and chronic conditions. From 83 studies in 24 LMICs, and aside from the historically shifted conditions, we found some evidence examining task-sharing for a small set of specific conditions (circumcision, some complex surgery, rheumatic heart diseases, epilepsy, mental health).ConclusionAs child health strategies are further redesigned to address the previously unmet needs careful strategic thinking on the development of an appropriate paediatric workforce is needed. To achieve coverage at scale countries may need to transform their paediatric workforce including possible new roles for non-physician cadres to support safe, accessible and high-quality care.

Project description:Childhood-cancer survival is dismal in most low-income countries, but initiatives for treating paediatric cancer have substantially improved care in some of these countries. The My Child Matters programme was launched to fund projects aimed at controlling paediatric cancer in low-income and mid-income countries. We aimed to assess baseline status of paediatric cancer care in ten countries that were receiving support (Bangladesh, Egypt, Honduras, Morocco, the Philippines, Senegal, Tanzania, Ukraine, Venezuela, and Vietnam).Between Sept 5, 2005, and May 26, 2006, qualitative face-to-face interviews with clinicians, hospital managers, health officials, and other health-care professionals were done by a multidisciplinary public-health research company as a field survey. Estimates of expected numbers of patients with paediatric cancer from population-based data were used to project the number of current and future patients for comparison with survey-based data. 5-year survival was postulated on the basis of the findings of the interviews. Data from the field survey were statistically compared with demographic, health, and socioeconomic data from global health organisations. The main outcomes were to assess baseline status of paediatric cancer care in the countries and postulated 5-year survival.The baseline status of paediatric oncology care varied substantially between the surveyed countries. The number of patients reportedly receiving medical care (obtained from survey data) differed markedly from that predicted by population-based incidence data. Management of paediatric cancer and access to care were poor or deficient (ie, nonexistent, unavailable, or inconsistent access for most children with cancer) in seven of the ten countries surveyed, and accurate baseline data on incidence and outcome were very sparse. Postulated 5-year survival were: 5-10% in Bangladesh, the Philippines, Senegal, Tanzania, and Vietnam; 30% in Morocco; and 40-60% in Egypt, Honduras, Ukraine, and Venezuela. Postulated 5-year survival was directly proportional to several health indicators (per capita annual total health-care expenditure [Pearson's r(2)=0.760, p=0.001], per capita gross domestic product [r(2)=0.603, p=0.008], per capita gross national income [r(2)=0.572, p=0.011], number of physicians [r(2)=0.560, p=0.013] and nurses [r(2)=0.506, p=0.032] per 1000 population, and most significantly, annual government health-care expenditure per capita [r(2)=0.882, p<0.0001]).Detailed surveys can provide useful data for baseline assessment of the status of paediatric oncology, but cannot substitute for national cancer registration. Alliances between public, private, and international agencies might rapidly improve the outcome of children with cancer in these countries.

Dataset Information

Child/youth, family and public engagement in paediatric services in high-income countries: A systematic scoping review.

Publications

Child/youth, family and public engagement in paediatric services in high-income countries: A systematic scoping review.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure