THE CHARACTERISTICS AND COMMUNITY-BASED PARTICIPATION OF CHILDREN WITH DISABILITIES AGED 10-12 YEARS IN THE UNITED KINGDOM

Introduction: Participation is a key therapy and health promotion outcome for children with disabilities. This thesis contributes to childhood disability participation literature by (a) synthesizing evidence on family factors consistently associated with the participation of children with disabilities, (b) providing evidence on characteristics, family circumstances and community-based participation of a nationally representative sample of children with and without disabilities, and (c) identifying factors associated with participation frequency of children with disabilities in community-based social and physical activities. Methods: A systematic review focusing on family factors consistently associated with participation was completed. This was followed by a quantitative analysis of data from the fifth sweep of the Millennium Cohort Study (MCS5) (2012-2013) which supplied evidence on 1,073 children with disabilities and 11,122 children without disabilities aged 10-12 in the United Kingdom. Chi-squared and logistic regression analyses were used. Results: Thirty studies included in the review provided evidence on non-modifiable family “status” factors and modifiable family “process” factors. “Status” factors consistently associated with participation were parental ethnicity, parental education, family type and family socio-economic status. Family “process” factors with consistent associations were parental mental and physical health functioning, parental self-efficacy beliefs, parental support, parental time, family preferences, and activity orientation. Quantitative data suggested that children with disabilities were more likely to be boys, have psychosocial and behavioural problems, live in single-parent households and have a parent with a longstanding illness compared to peers without disabilities. They also had greater restriction in community-based participation, especially in social and physical activities. Child psychosocial and behavioural problems, ethnicity, parental education, family income, parental physical activity, parental play of physically active games with a child and parental social support had independent effects on participation frequency of children with disabilities in social and physical activities. Conclusion: Support services for children with disabilities and their families should be strengthened. Interventions targeting child psychosocial and behavioural functioning and immediate social environment are required to promote children’s participation in community-based social and physical activities. Revisions to the “immediate family” component of the WHO’s conceptual framework for functioning, disability and health of children and youth are proposed. Keywords: children, disability, characteristics, participation, family factors, environment, community activitie

Barriers to access to cancer care for patients from the conflict-affected region of the Nagorno-Karabakh Republic:A qualitative study

Access to essential health services is a basic human right, yet many cancer patients living in conflict-affected regions face multiple obstacles to service use. The Nagorno-Karabakh Republic is a conflict-affected region in the South Caucasus (formerly) populated predominantly by ethnic Armenians. Multiple acute armed conflicts, the recent military occupation of the region and the prolonged military blockade of the Lachin Corridor (a humanitarian corridor connecting Nagorno-Karabakh to Armenia) exacerbated existing social, health, economic, and political fragilities in this region. As a result, cancer services provision was disrupted, with limited clarity on how the ongoing military blockade of a humanitarian corridor affected cancer patients' experiences of accessing cancer care locally and in bordering Armenia. Our study aimed to describe the experiences of patients from Nagorno-Karabakh in accessing the cancer care services they needed. We conducted remote semi-structured interviews with adult (aged ≥18 years) cancer patients receiving cancer care from three university hospital sites in Armenia and face-to-face interviews with cancer care professionals from these hospital sites. Interviews were conducted during the blockade of the Lachin Corridor between March and May 2023. Data were analysed thematically using a deductive approach. Twelve adult cancer patients (9 women) and 12 cancer care professionals took part. A key barrier to accessing cancer services was attributed to the Azerbaijani military occupation of the region and the blockade of a major roadway connecting Nagorno-Karabakh to Armenia. Patients talked in length about the challenges of finding transport and travelling long distances to reach essential cancer services in Armenia. Policies of free anti-cancer medication provision and decentralised medication supply were posed as a result of the military occupation, affecting patients’ timely access to anti-cancer medication. Out-of-pocket expenses for treatment, anti-cancer medication, travel, and temporary accommodation in Armenia placed a significant financial burden on cancer patients, exacerbated by the humanitarian crisis. Conflict-affected regions blockaded by military forces lack the capacity and targeted support to sustain their basic health services and provide care to those in need of life-saving treatments. Coordinated action from national and international organisations and governments is urgently needed to enhance humanitarian assistance and healthcare support to patients, their families and wider communities affected by military blockades and armed conflicts

Relationship Between Fatalistic Cancer Beliefs and Risky Health Behaviors

BACKGROUND: There is limited research on how fatalism influences risky health behaviors that are linked to higher cancer risks. This study investigates the relationship between risky health behaviors (tobacco smoking, electronic cigarette use, and heavy alcohol drinking) and fatalistic cancer beliefs while controlling for health care-related self-efficacy and sociodemographic and clinical factors among adults without a history of cancer.METHODS: We used cross-sectional data from the 2020 Health Information National Trends Survey (HINTS) 5 Cycle 4. The study sample included noninstitutionalized adults (aged ≥18 years without a self-reported cancer history (n = 2464). The outcome variable was risky health behaviors comprised of tobacco smoking, electronic cigarette use, and heavy alcohol drinking. We combined these 3 risky behaviors into a binary variable (0, not having risky health behavior; 1, having ≥1 risky health behavior). The key independent variable was cancer fatalistic beliefs. We used descriptive statistics and multivariate logistic regression analyses.RESULTS: Overall, 50% of the sample were women, 64.7% of participants self-identified as non-Hispanic White, 16.4% as Hispanic, and 10.6% as non-Hispanic Black. About 43% of participants reported having at least one risky health behavior. While holding all other factors constant, each unit increase in cancer fatalism score was associated with 30.0% higher odds of increased risky health behaviors (odds ratio = 1.30, 95% confidence interval 1.04-1.62, P  = .021) among adults without a history of cancer. CONCLUSION: By understanding the relationship between cancer-related fatalistic beliefs and risky health behaviors, cancer prevention outreach programs can be personalized to suit the unique needs of specific individuals and communities.</p

A multilevel bioecological analysis of factors influencing the mental health and psychosocial wellbeing of refugee children

Stella Arakelyan - ORCID: 0000-0003-0326-707X https://orcid.org/0000-0003-0326-707XAlastair Ager - ORCID: 0000-0002-9474-3563 https://orcid.org/0000-0002-9474-3563Replaced AM with VoR 2020-12-07. Replaced VoR with publisher updated version 2021-01-13.Background: This paper revisits the themes of an influential 1993 review regarding the factors shaping the mental health and psychosocial well-being of refugee children to take stock of developments in the evidence base and conceptualisation of issues over the last 25 years.Methods: The study deployed a systematic search strategy. This initially identified 784 papers, which was reduced to 65 studies following application of inclusion and exclusion criteria. We used a later iteration of Bronfenbrenner’s bioecological model of human development – the PPCT model - to consolidate evidence.Results: We identify a range of risk and protective factors operating at individual, familial, community and institutional and policy levels that influence outcomes for refuge children. The dynamics shaping the interaction of these influences are linked to the life course principles of socio-historical time and developmental age, proximal processes, and child agency.Conclusions: Actions at individual, familial, community, school, institutional and policy levels all have potential traction on mental health and psychosocial well-being of refuge children. However, evidence suggests that greatest impact will be secured by multilevel interventions addressing synergies between ecological systems, approaches engaging proximal processes (including parenting programmes) and interventions facilitating the agency of the developing refugee child.https://doi.org/10.1111/jcpp.1335562pubpub

Patient and public involvement in the ongoing applied artificial intelligence and complex health interventions co-design work

This briefing paper describes how we involved Patient and Public Involvement (PPI) methods in the ongoing applied artificial intelligence (AI) and complex interventions co-design project seeking to improve pathways of care for people with multiple long-term conditions (MLTCs) in Scotland. This project is part of the wider NIHR-funded programme called AIM-CISC (www.aim-cisc) which aims to use AI and state-of-the-art data science, social science, genomics, and health service research methods to understand the clustering of MLTCs within individuals, communities, and in key clinical contexts

Identifying opportunities to engage communities with social mobilisation activities to tackle NCDs in El Salvador in the context of the global COVID-19 pandemic

From Springer Nature via Jisc Publications RouterLizzie Caperon - ORCID: 0000-0001-5204-170X https://orcid.org/0000-0001-5204-170XStella Arakelyan - ORCID: 0000-0003-0326-707X https://orcid.org/0000-0003-0326-707XAlastair Ager - ORCID: 0000-0002-9474-3563 https://orcid.org/0000-0002-9474-3563Background: Social mobilisation is potentially a key tool in the prevention of non-communicable diseases (NCDs) in fragile settings. This formative study addressed existing and potential social mobilisation mechanisms seeking behaviour to tackle NCDs in El Salvador, with an emphasis on the implications in the context of the current COVID-19 pandemic. Methods: We conducted 19 semi-structured interviews with health workers, government officials, NGO leaders, and community members. Interviews addressed mechanisms for social mobilisation which existed prior to COVID-19, the ways in which these mechanisms tackled NCDs, the impact of COVID-19 on social mobilisation activities and new, emerging mechanisms for social mobilisation in the wake of the COVID-19 pandemic. Results: Findings indicate a growing awareness of NCDs within communities, with social mobilisation activities seen as valuable in tackling NCDs. However, major barriers to NCD prevention and treatment provision remain, with COVID-19 constraining many possible social mobilisation activities, leaving NCD patients with less support. Factors linked with effective social mobilisation of communities for NCD prevention included strong engagement of community health teams within community structures and the delivery of NCD prevention and management messages through community meetings with trusted health professionals or community members. There are gender differences in the experience of NCDs and women were generally more engaged with social mobilisation activities than men. In the context of COVID-19, traditional forms of social mobilisation were challenged, and new, virtual forms emerged. However, these new forms of engagement did not benefit all, especially those in hard-to-reach rural areas. In these contexts, specific traditional forms of mobilisation such as through radio (where possible) and trusted community leaders - became increasingly important. Conclusions: New mechanisms of fostering social mobilisation include virtual connectors such as mobile phones, which enable mobilisation through platforms such as WhatsApp, Facebook and Twitter. However, traditional forms of social mobilisation hold value for those without access to such technology. Therefore, a combination of new and traditional mechanisms for social mobilisation hold potential for the future development of social mobilisation strategies in El Salvador and, as appropriate, in other fragile health contexts.Funder: National Institute for Health Research; doi: http://dx.doi.org/10.13039/501100000272; Grant(s): 16/136/100pubpu

Factors contributing to emotional distress in Sierra Leone: A socio-ecological analysis

Stella Arakelyan - ORCID: 0000-0003-0326-707X https://orcid.org/0000-0003-0326-707XAlastair Ager - ORCID: 0000-0002-9474-3563 https://orcid.org/0000-0002-9474-3563Replaced AM with VoR 2021-06-24.Background There is increasing global evidence that mental health is strongly determined by social, economic and environmental factors, and that strategic action in these areas has considerable potential for improving mental health and preventing and alleviating mental disorders. Prevention and promotion activities in mental health must address the needs prioritised by local actors. The aim of this study was to identify stressors with the potential to influence emotional wellbeing and distress within the general population of Sierra Leone, in order to contribute to an inter-sectoral public mental health approach to improving mental health within the country.Methodology Respondents were a convenience sample of 153 respondents (60 women, 93 men) from five districts of Sierra Leone. Using freelisting methodology, respondents were asked to respond to the open question ‘What kind of problems do women/men have in your community?’. Data analysis involved consolidation of elicited problems into a single list. These were then organised thematically using an adaptation of the socio-ecological model, facilitating exploration of the interactions between problems at individual, family, community and societal levelsResults Overall, respondents located problems predominantly at community and societal levels. Although few respondents identified individual-level issues, they frequently described how problems at other levels contributed to physical health difficulties and emotional distress. Women identified significantly more problems at the family level than men, particularly related to relationships with an intimate partner. Men identified significantly more problems at the societal level than women, primarily related to lack of infrastructure. Men and women were equally focused on problems related to poverty and lack of income generating opportunities.Conclusion Poverty and inability to earn an income underpinned many of the problems described at individual, family and community level. Actions to address livelihoods, together with improving infrastructure and addressing gender norms which are harmful to both men and women, are likely key to improving the wellbeing of the Sierra Leone population.This research was funded by the National Institute for Health Research (NIHR) Global Health Research programme 16/136/100. The views expressed are those of the authors and not necessarily those of the National Health Service, the NIHR or the UK Department of Health and Social Care.https://doi.org/10.1186/s13033-021-00474-y15pubpu