Search

Introduction: This work describes a secondary analysis of a qualitative data set originally used to understand parent participants' preferences for the design and implementation of a screening programme for paediatric Type 1 diabetes (T1D). From this, their spontaneous preferences for peer support emerged, described here in the context of existing peer support programmes for the newly diagnosed alongside suggestions for their incorporation into screening programmes for T1D and a range of other conditions. Methods: Data were collected from semi‐structured interviews conducted with parents of children aged 3–13 years to explore their expectations, perceptions and preferences of a T1D paediatric screening programme. A secondary analysis of interviews from participants who spontaneously raised preferences for peer support was used to populate a novel framework informed by NHS England's key principles for the same, namely, Shared experiences and reciprocated support, Accessibility and inclusivity and Person‐centred and integrated peer support. Results: Parents in 29 of 33 interviews spontaneously described the potential value of peer support if receiving a result indicating a positive (presymptomatic T1D result) from a screening programme. Specifically, the value of 'Shared experiences and reciprocated support' in terms of emotional support and reassurance, and access to more directly interpretable and relevant information related to the condition; 'Accessibility and inclusivity' relating to access to a community of similar individuals, whether in person or online; 'Person‐centred and integrated peer‐support' and the need for support reflecting the changing need of the child and the integration of peer support with clinical care. Conclusions: The needs of peer support described by parents involved in T1D paediatric screening appear to be shared with those of families with children diagnosed with a range of life‐altering conditions. Although the needs of peer support for paediatric screening may differ across conditions, our findings are a valuable starting point for its design both in T1D and other examples of similar population screening programmes. Patient or Public Contribution: Patients and the public have been involved throughout the design of the ELSA study and have worked with us to inform the study process. They contributed to the design and content of patient‐facing materials, the content of our topic guides and the analysis and interpretation of our findings. [ABSTRACT FROM AUTHOR]

Background: Multimorbidity or multiple long-term conditions (MLTCs), the coexistence of two or more chronic conditions within an individual, presents a growing concern for healthcare systems and individuals' well-being. However, we know little about the experiences of those living with MLTCs in low- and middle-income countries (LMICs) such as India. We explore how people living with MLTCs describe their illness, their engagements with healthcare services, and challenges they face within primary care settings in Kerala, India. Methods: We designed a qualitative descriptive study and conducted in-depth, semi-structured interviews with 31 people (16 males and 15 females) from family health centres (FHCs) in Kerala. Interview data were recorded, transcribed, and thematic analysis using the Framework Method was undertaken. Findings: Two main themes and three sub-themes each were identified; (1) Illness impacts on life (a)physical issues (b) psychological difficulties (c) challenges of self-management and (2) Care-coordination maze (a)fragmentation and poor continuity of care (b) medication management; an uphill battle and (c) primary care falling short. All participants reported physical and psychological challenges associated with their MLTCs. Younger participants reported difficulties in their professional lives, while older participants found household activities challenging. Emotional struggles encompassed feelings of hopelessness and fear rooted in concerns about chronic illness and physical limitations. Older participants, adhering to Kerala's familial support norms, often found themselves emotionally distressed by the notion of burdening their children. Challenges in self-management, such as dietary restrictions, medication adherence, and physical activity engagement, were common. The study highlighted difficulties in coordinating care, primarily related to traveling to multiple healthcare facilities, and patients' perceptions of FHCs as fit for diabetes and hypertension management rather than their multiple conditions. Additionally, participants struggled to manage the task of remembering and consistently taking multiple medications, which was compounded by confusion and memory-related issues. Conclusion: This study offers an in-depth view of the experiences of individuals living with MLTCs from Kerala, India. It emphasizes the need for tailored and patient-centred approaches that enhance continuity and coordination of care to manage complex MLTCs in India and similar LMICs. [ABSTRACT FROM AUTHOR]

Background: Atrial fibrillation (AF) is a major risk factor for stroke. To enable improvements to AF diagnosis and follow-up care, understanding current patient pathways and barriers to optimal care are essential. We investigated the patient care pathways and their drivers, and the impact of the COVID-19 pandemic on patient pathways in a middle-income country setting, Brazil. Methods: This mixed-methods study in São Paulo, included adults (≥18y) with AF from 13 primary/secondary healthcare facilities. Surveys using baseline, follow-up (administered ≥two months after baseline) and COVID-19 questionnaires (quantitative), and three focus group discussions (FGDs) were conducted. Minimum sample size for the quantitative component was 236 and we aimed to reach saturation with at least three FGDs for the qualitative component. Descriptive statistics were used for quantitative data and a content analysis was used for qualitative data to identify themes related to AF diagnosis and follow-up care. Results: 267 participants completed the baseline questionnaire: 25% were diagnosed in primary care, 65% in an emergency or inpatient department. At follow-up (n = 259), 31% visited more than one facility for AF care, and 7% had no follow-up. Intervals between international normalised ratio (INR) tests were increased during the pandemic, and the number of healthcare visits and availability of medication were reduced. Seventeen patients participated in three FGDs and revealed that AF diagnosis often occurred following a medical emergency and patients often delay care-seeking due to misconceptions about AF symptoms. Long waiting times, doctor/patient interactions and health system factors, such as doctor availability and the referral system, influence where participants visited for follow-up care. Conclusions: Lack of public awareness and underdeveloped primary healthcare lead to delayed diagnosis, which impacts clinical outcomes and excess patient and healthcare system costs. Health system, care-provider, and pandemic factors disrupt timely and effective continuity of care. [ABSTRACT FROM AUTHOR]