The Transformational Empowerment for Adolescent Marginalised Girls in Malawi (TEAM) project provides complementary basic education to adolescents who have been left behind by the mainstream education ...system. Its students are primarily girls who face multiple intersecting barriers to learning, including disability, child marriage, motherhood, poverty, and harmful gender norms. Distance learning provided by the Government of Malawi during the COVID-19 pandemic relied on students proactively accessing centrally created lessons through technologies such as radio and the internet. In this field note, I argue that such an approach does not meet the needs of the most educationally marginalized children, who require holistic support to overcome barriers arising from their individual characteristics, available resources, and lived environment. I contrast the mainstream approach with the TEAM Girl Malawi response, which used a capabilities framework that led to three key innovations. First, a paper-based mode of delivery was complemented by in-person support from teachers. Second, the lesson content prioritized resilience and social-emotional skills as the foundation for learning, and teachers adapted a core curriculum to individual students' learning needs. Third, teachers' roles were expanded to include child protection and community engagement. I conclude this field note by identifying learning points based on students' experiences and learning outcomes, which demonstrate how future distance learning responses during a pandemic can be inclusive of all learners.
To explore parents' perceptions/experiences of help-seeking for unsettled baby behaviours, including views and experiences of obtaining advice from primary healthcare professionals.
Semi-structured ...qualitative interviews.
Recruitment occurred via social media, general practice and health visiting teams. Remote semi-structured interviews were conducted with parents of babies. Babies were under 12 months old at time of interview, and parents had perceived unsettled baby behaviours in their first 4 months of life. Interviews were transcribed and data analysed using reflexive thematic analysis.
Based on interviews with 25 mothers, four main themes were developed. 'The need for answers' highlighted parental uncertainty about what constitutes normal baby behaviour, leading to help-seeking from multiple sources. 'The importance of health professionals' and 'Experiencing health professional support' identified perceptions about limited access, communication, mixed advice and how these influenced parental perception/management of behaviours. 'Foundations to help-seeking' highlighted important roles of social support and online help for valued shared experiences, emotional and practical support.
Health professional access and advice are important to parents, despite the increasing role of online help and importance of social support. More support and improved access to reliable sources of information is needed for parents.
Findings will inform future research and clinical practice to address parental uncertainties. Qualitative research with front-line health professionals is necessary.
Findings can inform the development of resources to support professionals/families managing unsettled babies.
Standards for Reporting Qualitative Research.
A public contributor was involved throughout all stages of the research. Emerging findings were discussed at a parent group. WHAT DOES THIS PAPER CONTRIBUTE TO THE WIDER GLOBAL CLINICAL COMMUNITY?: Addressing parental uncertainties is important; about what is normal, non-pharmacological approaches and when pharmacological intervention is required. A digital information/self-management intervention may be useful for parents/clinicians.
To identify the barriers and facilitators that people with severe mental illness and people with learning disabilities may encounter when accessing cancer screening and make recommendations for ...implementing reasonable adjustments throughout cancer screening services.
An 18-month sequential, mixed-methods study comprising of two phases of work and underpinned by Normalisation Process Theory, recruiting from across the North-East and North Cumbria. The first phase aims to identify the barriers and facilitators for people with severe mental illness in accessing cervical, breast and colorectal cancer screening. A systematic review of eight databases (Part 1a; PROSPERO registration number: CRD42022331781) alongside semi-structured interviews of up to 36 people with severe mental illness (Part 1b) will occur. Additional characteristics indicating populations whose perspectives may not have been accounted for in the systematic review will be targeted in the interviews. Potential participants will be identified from a range of settings across the North-East and North Cumbria, including through social media and gatekeepers within National Health Service Trusts and charities. Interviews will be analysed using framework analysis, which will be in line with the Normalisation Process Theory. The second phase of the project (part 2a) involves triangulating the results of the systematic review and interviews with existing research previously completed with people with learning disabilities accessing cancer screening. This will be to identify population specific barriers and facilitators across people with learning disabilities and people with severe mental illness to access cancer screening services. Following triangulation, part 2b will include designing and planning a future study involving stakeholders in cancer screening to explore the feasibility, practicality, and priority for implementing the recommendations to improve person centred cancer screening services (PECCS).
This study has received Teesside University ethical approval, Health Research Authority approval (IRAS: 310622) and favourable opinion (REF: 22/PR/0793). Findings will be disseminated through a range of academic and non-academic modes including infographics, blog posts and academic publications.
Crying is an essential behaviour in infants, occurring on a continuum, and only rarely indicates serious underlying diagnosis. Searching online for information about excessive crying has become ...common, using the internet to seek health information and support through forums. The aim of this study was to examine data systematically derived from discussion threads on two online parent forums to explore discussions around excessive infant crying. This study utilised two qualitative approaches; the first, a thematic analysis to explore concerns around excessive crying, and the second, discursive psychology, to explore how diagnostic labels (underlying medical cause of crying) are negotiated within an online thread. The thematic analysis identified a tension between interpreting what is ‘normal’ crying and when crying is a sign of an ‘underlying problem’ leading to a search for a diagnostic label. This tension seemed to be heightened when expectations that infancy should be a ‘happy time’ were threatened by excessive crying. Responses to original posts offered support for parents/caregivers to ‘trust their instincts' and to explore different diagnostic labels. The discursive psychology analysis explored responders' accounts of their experiences to increase credibility and showcase expertise. Forums play an important social role, meeting needs for reassurance, validation, and empowerment. This study suggests that labels are used interchangeably, and further work is needed to understand how perceptions are developed and acted on in the community, as well as online. Furthermore, this study suggests there is a need for supporting parents/caregivers in understanding and managing common behaviours such as excessive crying.
•Infant crying is essential but excessive crying can be worrying for parents.•Forums are used to determine if crying is normal or a sign of an underlying problem.•There were suggestions of both medical and non-medical reasons for excessive crying.•Online forums provide reassurance and validation for managing common infant symptoms.•Shared experiences establish credibility and expertise in excessive crying.
Abstract Aims To identify the safety incident reporting systems and processes used within care homes to capture staff reports of safety incidents, and the types and characteristics of safety ...incidents captured by safety incident reporting systems. Design Systematic review following PRISMA reporting guidelines. Methods Databases were searched January 2023 for studies published after year 2000, written in English, focus on care homes and incident reporting systems. Data were extracted using a bespoke data extraction tool, and quality was assessed. Data were analysed descriptively and using narrative synthesis, with types and characteristics of incidents analysed using the International Classification for Patient Safety. Data Sources Databases were CINAHL, MEDLINE, PsycINFO, EMBASE, HMIC, ASSISA, Nursing and Allied Health Database, MedNar and OpenGrey. Results We identified 8150 papers with 106 studies eligible for inclusion, all conducted in high‐income countries. Numerous incident reporting processes and systems were identified. Using modalities, typical incident reporting systems captured all types of incidents via electronic computerized reporting, with reports made by nursing staff and captured information about patient demographics, the incident and post‐incident actions, whilst some reporting systems included medication‐ and falls‐specific information. Reports were most often used to summarize data and identify trends. Incidents categories most often were patient behaviour , clinical process/procedure , documentation , medication/intravenous fluids and falls . Various contributing and mitigating factors and actions to reduce risk were identified. The most reported action to reduce risk was to improve safety culture. Individual outcomes were often reported, but social/economic impact of incidents and organizational outcomes were rarely reported. Conclusions This review has demonstrated a complex picture of incident reporting in care homes with evidence limited to high‐income countries, highlighting a significant knowledge gap. The findings emphasize the central role of nursing staff in reporting safety incidents and the lack of standardized reporting systems and processes. Implications for the Profession and/or Patient Care The findings from this study can inform the development or adaptation of safety incident reporting systems in care home settings, which is of relevance for nurses, care home managers, commissioners and regulators. This can help to improve patient care by identifying common safety issues across various types of care home and inform learning responses, which require further research. Impact This study addresses a gap in the literature on the systems and processes used to report safety incidents in care homes across many countries, and provides a comprehensive overview of safety issues identified via incident reporting. Reporting Method PRISMA. Patient or Public Contribution A member of the research team is a patient and public representative, involved from study conception.
Objective
Evidence suggests that people with severe mental illness (PwSMI) are 2.1 times more likely to die from cancer before the age of 75, compared to people without Severe mental illness (SMI). ...Yet, cancer screening uptake is low among PwSMI. This mixed‐methods systematic review aimed to identify the barriers and facilitators for PwSMI deciding to access and attend primary cancer screening of the cervix, breast and colon.
Methods
Six electronic databases and two grey literature sources were searched, with 1017 records screened against inclusion criteria. Included papers were appraised and data synthesised using the constructs of Normalisation Process Theory.
Results
Twenty papers met the inclusion criteria. Factors that impact upon uptake of PwSMI accessing cancer screening were found to include age, gender, race, and income. Common barriers to attending screening included poor communication from healthcare staff, stigmatising attitudes, and accessibility problems such as no access to transportation. While, facilitators included social support from friends, family, and healthcare providers.
Conclusions
Due to ease and privacy, colorectal screening was found to have fewer barriers when compared to cervical and breast screening. The review identified multiple barriers that can be addressed and targeted to support decision‐making for cancer screening among PwSMI. The protocol was registered with PROSPERO (CRD42022331781).
Objectives
To understand knowledge of, attitudes towards and decision‐making around cervical and breast cancer screening in women with learning disabilities, family carers and paid carers.
Methods
A ...Q methodology study involving 13 women with learning disabilities, three family carers and five paid care workers, from the North‐East of England. A Q‐sort of 28 statements was completed with all participants completing a post‐Q‐sort interview to understand the reason behind the card placements. Factor analysis was completed using PQMethod and interpreted using framework analysis.
Results
Factor 1, named ‘Personal choice and ownership’, explores how women with learning disabilities want to be supported to make their own decision to attend cancer screening and explored their preferred support needs. Factor 2, named ‘Protecting vs. enablement’, portrayed the battle family carers and paid care workers felt to protect women with learning disabilities from harm, whilst feeling that they were supporting women with learning disabilities to decide to attend cancer screening. Eight consensus statements were identified indicating a shared perspective.
Conclusions
Cancer screening services should ensure that women with learning disabilities are supported to make informed decisions to attend cancer screening and then be further supported throughout the cancer pathway.
Background
Women with learning disabilities are less likely to access cervical and breast cancer screening when compared to the general population. The Social Ecological Model (SEM) was used to ...examine the inequalities faced by women with learning disabilities in accessing cervical and breast cancer screening in England, UK.
Methods
The findings from a qualitative systematic review and a Q methodology study were triangulated. Framework analysis, in line with the SEM, was used to develop an integrated set of findings.
Findings
Women with learning disabilities may lack knowledge of cancer symptoms, and cancer screening, as well as being scared about the process and getting the results. The attitudes of family and paid carers towards screening may influence women with learning disabilities' decisions as to whether screening is seen as favourable; support and training may ensure unbiased perspectives. Barriers were also associated with how cancer screening programmes are designed, such as postal invitations which assumes an ability to read. In addition, screening staff need to be aware of the general needs of people with learning disabilities, such as the benefits of easy‐to‐read documents. Lastly, multidisciplinary working is required so reasonable adjustments can be embedded into cancer screening pathways.
Conclusion
This article highlights multiple methods to reduce the inequalities faced by women with learning disabilities, which can be achieved through reasonable adjustments. Embedding reasonable adjustments can support women with learning disabilities in making an informed decision and accessing screening if they choose to. This may result in women with learning disabilities getting a timely cancer diagnosis.
Accessible Summary
Women with learning disabilities should be invited for checks to find out if they have cancer. Sometimes women with learning disabilities do not go for these checks, and we wanted to find out why.
We found that women might not know about these checks or know what they will be asked to do in them. We found that women are also scared about going for the checks.
Our results found there are a lot of things that can help women. Carers, nurses, and doctors can help women in knowing about the checks, and writing should have pictures to help women understand. Information can be given to women but these may not be routinely used.
We found that women should be asked what can help them to go for the check.
Abstract
Background
Care home residents transitioning from hospital are at risk of receiving poor-quality care with their safety being challenged by the SARS-CoV-2 virus (COVID-19) pandemic. Little ...is known about how care home staff worked with hospital staff and other healthcare professionals to address these challenges and make improvements to increase patient safety.
Objective
To gain insight into how the COVID-19 pandemic influenced the safety of transitions between hospital and care home.
Method
Semi-structured interviews were conducted with care home staff and healthcare professionals involved in hospital to care home transitions including doctors, nurses, paramedics, pharmacists, social workers, and occupational therapists. Commonalities and patterns in the data were identified using thematic analysis.
Results
Seventy participants were interviewed. Three themes were developed, first, ‘new challenges’, described care homes were pressurised to receive hospital patients amidst issues with COVID-19 testing, changes to working practices and contentious media attention, which all impacted staff negatively. Second, ‘dehumanisation’ described how care home residents were treated, being isolated from others amounted to feelings of being imprisoned, caused fear and engendered negative reactions from families. Third, ‘better ways of working’ described how health and social care workers developed relationships that improved integration and confidence and benefited care provision.
Conclusion
The COVID-19 pandemic contributed to and compounded high-risk hospital-to-care home discharges. Government policy failed to support care homes. Rapid discharge objectives exposed a myriad of infection control issues causing inhumane conditions for care home residents. However, staff involved in transitions continued to provide and improve upon care provision.
Cancer is a global public health problem, but its exact prevalence in people with intellectual disabilities is still uncertain. This population, with limited health skills and complex health needs, ...faces many challenges in cancer prevention, screening, timely diagnosis and treatment. Furthermore, they are often underrepresented in general cancer prevention and screening policies across Europe, leading to widened disparities in health outcomes and premature mortality. Thus, unified national and local policies are needed to reduce inequalities and promoting a pan-European inclusion of people with intellectual disabilities. Our goal is to raise public awareness of this issue, including the involvement of people with intellectual disabilities, and promote engagement from relevant stakeholders. The COST Action ‘Cancer- Understanding Prevention in Intellectual Disabilities’ (CUPID) project will address health inequalities faced by people with intellectual disabilities in relation to cancer, and support the development of policy recommendations specifically tailored to their unique cognitive and healthcare needs, having a positive long-term impact on quality of life.
