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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

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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

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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:BackgroundThe last 3 years have witnessed global health challenges, ranging from the pandemics of COVID-19 and mpox (monkeypox) to the Ebola epidemic in Uganda. Public health surveillance is critical for preventing these outbreaks, yet surveillance systems in resource-constrained contexts struggle to provide timely disease reporting. Although community health workers (CHWs) support health systems in low-income and middle-income countries (LMICs), very little has been written about their role in supporting public health surveillance. This review identified the roles, impacts and challenges CHWs face in public health surveillance in 25 LMICs.MethodsWe conducted a scoping review guided by Arksey and O'Malley's framework. We exported 1,156 peer-reviewed records from Embase, Global Health and PubMed databases. After multiple screenings, 29 articles were included in the final review.ResultsCHWs significantly contribute to public health surveillance in LMICs including through contact tracing and patient visitation to control major infectious diseases such as HIV/AIDS, malaria, tuberculosis, Ebola, neglected tropical diseases and COVID-19. Their public health surveillance roles typically fall into four main categories including community engagement; data gathering; screening, testing and treating; and health education and promotion. The use of CHWs in public health surveillance in LMICs has been impactful and often involves incorporation of various technologies leading to improved epidemic control and disease reporting. Nonetheless, use of CHWs can come with four main challenges including lack of education and training, lack of financial and other resources, logistical and infrastructural challenges as well as community engagement challenges.ConclusionCHWs are important stakeholders in surveillance because they are closer to communities than other healthcare workers. Further integration and training of CHWs in public health surveillance would improve public health surveillance because CHWs can provide health data on 'hard-to-reach' populations. CHWs' work in public health surveillance would also be greatly enhanced by infrastructural investments.

Project description:BackgroundChildhood-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).MethodsBetween 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.FindingsThe 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]).InterpretationDetailed 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.

Project description:ObjectiveTo support evidence informed decision-making, we systematically examine the effectiveness and cost-effectiveness of community engagement interventions on routine childhood immunisation outcomes in low-income and middle-income countries (LMICs) and identify contextual, design and implementation features associated with effectiveness.DesignMixed-methods systematic review and meta-analysis.Data sources21 databases of academic and grey literature and 12 additional websites were searched in May 2019 and May 2020.Eligibility criteria for selecting studiesWe included experimental and quasi-experimental impact evaluations of community engagement interventions considering outcomes related to routine child immunisation in LMICs. No language, publication type, or date restrictions were imposed.Data extraction and synthesisTwo independent researchers extracted summary data from published reports and appraised quantitative risk of bias using adapted Cochrane tools. Random effects meta-analysis was used to examine effects on the primary outcome, full immunisation coverage.ResultsOur search identified over 43 000 studies and 61 were eligible for analysis. The average pooled effect of community engagement interventions on full immunisation coverage was standardised mean difference 0.14 (95% CI 0.06 to 0.23, I2=94.46). The most common source of risk to the quality of evidence (risk of bias) was outcome reporting bias: most studies used caregiver-reported measures of vaccinations received by a child in the absence or incompleteness of immunisation cards. Reasons consistently cited for intervention success include appropriate intervention design, including building in community engagement features; addressing common contextual barriers of immunisation and leveraging facilitators; and accounting for existing implementation constraints. The median intervention cost per treated child per vaccine dose (excluding the cost of vaccines) to increase absolute immunisation coverage by one percent was US$3.68.ConclusionCommunity engagement interventions are successful in improving outcomes related to routine child immunisation. The findings are robust to exclusion of studies assessed as high risk of bias.

Project description:BackgroundSurvey data that categorizes gender identity in binary terms and conflates sex and gender limits knowledge around the experience of gender minority populations, whose gender identity or expression does not align with the sex they were assigned at birth. In this review, we outline the existing survey research on the experience of a gender minority demographic for whom there is particularly limited data: adolescents and youth in low and middle-income countries (LMICs).MethodsThis paper is a scoping review of peer-reviewed articles, published in English, that use survey data to examine the experience of gender minority adolescents and youth in LMICs. We conducted a search on two major databases using key terms related to gender identity, adolescence and youth, and country and region. This search yielded 385 articles. Following a team-conducted review, we retained 33 articles for the final analysis.ResultsOur review shows that surveys with adolescents and youth in LMICs are increasingly including questions and taking sampling approaches that allow gender minority populations to be visible in survey data. Surveys that do so are largely focused in upper middle-income countries (n = 24), rather than lower middle-income or low-income countries, with South East Asia a notable sub-region of focus (n = 15). Sexual health, mental health, and violence are key topics of interest. Most of the surveys rely on some form of network-driven sampling focused on sexual and/or gender minorities (n = 22). The studies vary in how they ask about gender identity, both in terms of question formulation and the answer categories that are offered, as well as the extent to which they describe the questions in the article text.ConclusionsThis review reveals a growing body of work that provides important insights into the experiences of gender minority adolescents and youth in LMICs. More studies could integrate these approaches, but it must be done in a way that is thoughtful about cultural and political context. Given the relatively nascent nature of such research, we encourage scholars to continue providing details on methodology, including around participant recruitment and the development of gender identity questions. This information would be valuable for researchers seeking to better include gender minorities and their experiences in survey research, but who might be daunted methodologically.

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.

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