Understanding the use of digital technologies to provide disability services remotely during the COVID-19 pandemic; a multiple case study design.

BACKGROUND: Using digital technologies to provide services and supports remotely may improve efficiency and accessibility of healthcare, and support people with disabilities to live independently. This study aimed to explore the experience of using digital technologies to access and provide disability services and supports during the Covid-19 pandemic, from the perspective of people with disabilities, families and service providers. METHODS: Using a multiple case study design, we purposively sampled three cases based on service user characteristics and geographical reach of the service. We conducted semi-structured interviews with 40 service users and service providers. Topic guides and analysis were informed by the Consolidated Framework for Implementation Research (CFIR). Analysis followed a largely deductive approach, using the CFIR constructs as a coding framework. A summary memo was developed for each case. Influence and strength of each construct was rated to identify constructs that influenced implementation of digital technologies. Ratings were compared across services to identify facilitators and barriers to implementation. RESULTS: Service users and providers were positive about using digital technologies to access and provide disability services and supports remotely. Advantages over in-person delivery included reduced travel time, increased opportunity for peer support and peer learning, more choice and opportunity to participate in activities, and an enhanced sense of self while accessing services from the secure environment of their home. The urgency to identify new modes of service delivery to meet the needs of service users during Covid-19 was a strong facilitator but did not necessarily result in successful implementation. Other factors that were strong facilitators were the use of adaptations to enable service users to access the online service, service users' willingness to try the online service, service users' persistence when they encountered challenges, and the significant time and effort that service providers made to support service users to participate in the online service. Barriers to implementation included the complexity of accessing online platforms, poor design quality of online platforms, and organisations prioritising in-person delivery over online services. CONCLUSIONS: These findings may allow service providers to leverage facilitators that support implementation of online disability services and supports.

A qualitative exploration of children's lives with rare diseases.

BACKGROUND: Rare diseases encompass a diverse group of debilitating and sometimes life-threatening conditions that affect a small percentage of the population, posing a significant public health challenge. Despite their rarity, around 70% of these diseases afflict children, yet limited research has focused on their experiences. This study aimed to gain insights into the day-to-day challenges children living with rare diseases face. METHODS: We conducted semistructured one-to-one interviews with 11 children and young people (7-16 years) diagnosed with a range of rare diseases, purposively sampled from a tertiary pediatric healthcare setting in Ireland. We analyzed the interview transcripts, and themes were devised inductively. RESULTS: Two themes were identified: "Knowledge and Understanding of Rare Diseases" and "Fitting in Versus Feeling Different." These themes emerged across various settings-the home, hospital, school, and social environments-to illustrate the impact of rare diseases on the participants' daily lives. A conceptual framework was developed to illustrate how the children's knowledge, experiences, and emotions shape their identity in a rare disease context. CONCLUSIONS: Our analysis revealed a complex interplay between the participants' sense of belonging and their awareness of being different, influenced by the manifestations and demands of their rare conditions or illnesses. This duality in their identity was most pronounced in social settings, where the participants felt the most significant impact of their rare diseases. Understanding this interplay sheds light on the unique social challenges children with rare medical conditions face. Raising awareness about these conditions could mitigate these children's social challenges, fostering a more inclusive society for those with rare diseases.

Access of older people to primary health care in low and middle-income countries: A systematic scoping review.

INTRODUCTION: Ensuring access for older people to Primary Health Care (PHC) is vital to achieve universal health coverage, improve health outcomes, and health-system performance. However, older people living in Low-and Middle-Income Countries (LMICs) face barriers constraining their timely access to appropriate care. This review aims to summarize the nature and breadth of literature examining older people's experiences with access to PHC in LMICs, and access barriers and enablers. METHODS: Guided by Arksey and O'Malley's framework, four databases [CINAHL, Cochrane, PubMed, and Embase] were systematically searched for all types of peer-reviewed articles published between 2002 and 2023, in any language but with English or French abstract. Gray literature presenting empirical data was also included by searching the United Nations, World Health Organization, and HelpAge websites. Data were independently screened and extracted. RESULTS: Of 1165 identified records, 30 are included. Data were generated mostly in Brazil (50%) and through studies adopting quantitative designs (80%). Older people's experiences varied across countries and were shaped by several access barriers and enablers classified according to the Patient-Centered Access to Healthcare framework, featuring the characteristics of the care delivery system at the supply side and older people's attributes from the demand side. The review identifies that most access barriers and enablers pertain to the availability and accommodation dimension, followed by the appropriateness, affordability, acceptability, and approachability of services. Socio-economic level and need perception were the most reported characteristics that affected older people's access to PHC. CONCLUSIONS: Older people's experiences with PHC access varied according to local contexts, socioeconomic variables, and the provision of public or private health services. Results inform policymakers and PHC practitioners to generate policies and services that are evidence-based and responsive to older people's needs. Identified knowledge gaps highlight the need for research to further understand older people's access to PHC in different LMICs.

Reducing risk behaviours after stroke: An overview of reviews interrogating primary study data using the Theoretical Domains Framework.

BACKGROUND: Lifestyle changes, in addition to preventive medications, optimise stroke secondary prevention. Evidence from systematic reviews support behaviour-change interventions post-stroke to address lifestyle-related risk. However, understanding of the theory-driven mediators that affect behaviour-change post-stroke is lacking. METHODS: Electronic databases MEDLINE, Embase, Epistemonikos and Cochrane Library of Systematic Reviews were searched to March 2023 for systematic reviews addressing behaviour-change after stroke. Primary studies from identified systematic reviews were interrogated for evidence supporting theoretically-grounded interventions. Data were synthesized in new meta-analyses examining behaviour-change domains of the Theoretical Domains Framework (TDF) and secondary prevention outcomes. RESULTS: From 71 identified SRs, 246 primary studies were screened. Only 19 trials (N = 2530 participants) were identified that employed theoretically-grounded interventions and measured associated mediators for behaviour-change. Identified mediators mapped to 5 of 14 possible TDF domains. Trial follow-up ranged between 1-12 months and no studies addressed primary outcomes of recurrent stroke or cardiovascular mortality and/or morbidity. Lifestyle interventions targeting mediators mapped to the TDF Knowledge domain may improve the likelihood of medication adherence (OR 6.08 [2.79, 13.26], I2 = 0%); physical activity participation (OR 2.97 [1.73, 5.12], I2 = 0%) and smoking cessation (OR 10.37 [3.22, 33.39], I2 = 20%) post-stroke, supported by low certainty evidence; Lifestyle interventions targeting mediators mapping to both TDF domains of Knowledge and Beliefs about Consequences may improve medication adherence post-stroke (SMD 0.36 [0.07, 0.64], I2 = 13%, very low certainty evidence); Lifestyle interventions targeting mediators mapped to Beliefs about Capabilities and Emotions domains may modulate low mood post-stroke (SMD -0.70 [-1.28, -0.12], I2 = 81%, low certainty evidence). CONCLUSION: Limited theory-based research and use of behaviour-change mediators exists within stroke secondary prevention trials. Knowledge, Beliefs about Consequences, and Emotions are the domains which positively influence risk-reducing behaviours post-stroke. Behaviour-change interventions should include these evidence-based constructs known to be effective. Future trials should address cardiovascular outcomes and ensure adequate follow-up time.

Identifying the role of public health nurses during first postnatal visits: Experiences of mothers and public health nurses in Ireland.

Aim and Objective: Explore the views and experiences of quality of care provided during a first postnatal visit from the perspectives of mothers and public health nurses. Background: Quality of nursing care is high on the policy agenda internationally, especially in the year of Nurse and Midwife. Public health nurses are acknowledged nationally and globally as essential health professionals supporting infants and parents. The first postnatal visit provided by the public health nurse is a complex intervention for mothers incorporating physical, social, educational and emotional support, and we know little about the quality of care provided. International evidence suggests a lack of consensus in setting priorities for this crucial visit. Design: Exploratory, qualitative design, utilising focus groups and interviews and analysed using thematic analysis. Setting/Participants: Nineteen public health nurses from all four health service regions and five mothers from one health service region were interviewed to explore the quality of care provided during first postnatal visits. Methods: Adopting qualitative data collection methods for the study; five individual semi-structured interviews with mothers ascertained their experiences of care. Further, four focus groups with public health nurses explored their understanding of the quality of care provided to mothers. The data collection period was August 2015 to January 2016. Interviews were audio-recorded, transcribed verbatim and analysed using thematic analysis. Results: Mothers and public health nurses identified that public health nurses were crucial for providing support during the first postnatal visit as mothers required care and advice around physical, psychological and social wellbeing for themselves and their new infant. Discordant experiences of quality care and lack of standardisation of care practices emerged. Nurses identified relationship building, empowerment and health promotion as pivotal to the public health nurses' role. Mothers acknowledged the supportive and practical aspects of the care provided. Conclusion: This is the first Irish study combining nurses and mothers experiences, identifying care provided at the first postnatal visit, presenting the quality of care experienced. This visit is vital for relationship-building and empowering mothers' child-care and self-care abilities. The findings provide an insight into how quality of care is perceived by public health nurses and mothers. Experiences facilitate reflection and the development of quality improvements to ensure mothers and infants are adequately supported during the first postnatal visit.