'Will anybody listen?' Parents' views on childhood asthma care: a qualitative study.

BACKGROUND: Asthma is the most common chronic disease in children, resulting in considerable morbidity and healthcare utilisation, especially in geographical areas with high deprivation. Parents play a pivotal role in children's asthma management. AIM: To explore the views of parents whose children have asthma, regarding barriers and facilitators to receiving adequate asthma care. DESIGN & SETTING: A qualitative study conducted in an urban, multi-ethnic setting with high socioeconomic deprivation and paediatric asthma-related hospital admissions. METHOD: The study used a pragmatic approach underpinned by a perspective of critical realism. Parents of children with asthma were recruited through purposive and convenience sampling, and data were collected through semi-structured interviews. Transcripts were analysed using thematic analysis, facilitated by NVivo12 software. RESULTS: Ten parents participated in nine interviews. Six themes were identified relating to the following: (1) the establishment of a new life dynamic following a diagnosis of asthma; (2) the turbulent and drawn-out process of asthma diagnosis; (3) the roles and expectations of the partnership established between parents and healthcare services; (4) the importance of schools in asthma management; (5) sources and access to relevant information; and (6) the importance of social support networks. Parents frequently felt unsupported and misunderstood, particularly during the diagnostic process. CONCLUSION: Unmet parental educational and emotional needs, particularly around the time of diagnosis, were identified as a key barrier to adequate asthma management. Deeper understanding of gaps in support can instruct asthma care delivery and inform co-produced interventions, thus improving asthma outcomes in children.

Concerns and expectations in women with polycystic ovary syndrome vary across age and ethnicity: findings from PCOS Pearls Study.

Objective: To understand and explore the perceptions and opinions of women with polycystic ovary syndrome (PCOS) and further delineate the variations across age and ethnicity. Design: Qualitative survey focussed on lived experiences of people with PCOS. Participants could share their views either as written text or as voice note audio recording(s) on WhatsApp. The data from the audio were transcribed verbatim. Responses were coded by two study members independently, using a thematic inductive method with NVivo 12. Two senior study members then reviewed these codes to identify common themes. Subjects: Women with PCOS aged 18-60 years. Results: 43 of 45 participants had a formal diagnosis of PCOS, the remaining two had suspected PCOS which was under investigation. Four participants opted to share their views as voice note recordings. Poor mental health was the most reported (83.3% of participants), followed by dermatological (81.0%) and menstrual issues (76.2%). Participants were generally dissatisfied with the care they received (88.1%). A lengthy diagnostic journey was reported in 35.7% of cases. 52.6% felt less feminine, particularly regarding weight gain and infertility. As part of the recommendations by participants, it was emphasised that others with the condition should educate themselves and be proactive in their management. 46.3% reported that being more enlightened regarding their condition improved their health outcomes and enabled them to advocate for their own care. Women in their 20s expressed distress due to poor mental health, needing a longer time to get the diagnosis, and having weight and eating concerns. While women with PCOS in their 30s discussed their menstrual irregularities and fertility issues, those in their 40s expressed their concerns about the societal expectations of women when diagnosed with PCOS. The concerns varied across ethnicities as well. Conclusion: PCOS has wide-ranging consequences for women living with the condition, with many dissatisfied with the clinical support they currently receive. The concerns and expectations vary across ages and ethnicities. Therefore, we propose involving women with PCOS to co-create clinical and educational resources informed by lived experiences to provide end-user-informed services.

A qualitative study exploring the lived experiences of patients living with mild, moderate and severe frailty, following hip fracture surgery and hospitalisation.

It is well recognised that hip fracture surgery is associated with a negative impact on short and long-term post-operative physical health and emotional well-being for patients. Furthermore, these patients are known to be frail with multiple co-morbidities. This study explores how frailty shapes the lived experiences of rehabilitation and recovery for patients who have undergone hip fracture surgery. Semi-structured interviews were conducted with sixteen participants, recently discharged from hospital following hip fracture surgery. Interpretative phenomenological analysis was applied to explore the lived experiences of frail patients and ascertain important themes. Patient experiences were captured in seven overarching themes: 1) the hospital as a place of "safety", 2) placing trust in others, 3) the slow recovery journey impeded by attitude and support, 4) maintaining autonomy and dignity whilst feeling vulnerable, 5) seeking a new normal, 6) loneliness and social isolation and 7) the ageing body. Based on our study findings, we have been able to suggest a number of opportunities to improve support for frailer patients in finding a new routine to their everyday lives, these include on-going physical and psychological support, information and education and a robust pathway for transition of care into the community. A conceptual thematic diagram is presented which helps to understand the experience and the complex needs of frail older people undergoing hip fracture surgery.

A systematic review of lived experiences of people with polycystic ovary syndrome highlights the need for holistic care and co-creation of educational resources.

Introduction: PCOS-related literature is mostly dominated by the medical perspective. However, the condition's lifelong, far reaching, and multifaceted impacts highlight the importance to gain the perspectives from those with PCOS. Therefore, we performed a systematic review to explore the current literatures and gaps around the experiences and perceptions of those living with PCOS. Method: A comprehensive search of seven electronic databases was conducted between July and October 2021. A total 34 from 1615 screened articles were included in this systematic review and subsequently coded using NVivo 12 software. The quality of individual studies was assessed by adaptation to the Critical Appraisal Skills Program (CASP) quality assessment tool. Results: Five domains were generated from the data: Signs/Symptoms, Diagnosis, Management, Perceptions, Resources and Improving Outcomes. Dissatisfaction surrounding the experience of diagnosis was common. Concerns surrounded perceived lack of knowledge from healthcare professionals and delays in diagnosis. Individual studies on adults and adolescents shared similar feelings. The consensus was found to be that current management was vague and generalised. Symptoms such as hirsutism, obesity, irregular menstruation challenge personal and societal expectations of femininity. Online PCOS resources are popular amongst those with PCOS but most of them lack evidence. A call for more culturally specific resources was found to be common ground amongst those with PCOS. Conclusion: Overall dissatisfaction amongst adults and adolescents regarding their diagnostic journey of PCOS. Tailored and culturally specific PCOS advice and management is necessary and can be achieved through co-creation of resources between healthcare professionals and those with PCOS. Systematic review registration: https://www.crd.york.ac.uk/prospero/, identifier CRD42021272371.

Pharmacist management of atrial fibrillation in UK primary care: a qualitative study.

BACKGROUND: Atrial fibrillation (AF) affects up to 2% of the UK population. AF is a potentially long-term condition that needs management, and as such primary care pharmacists may have a substantial role in supporting the management of AF. OBJECTIVES: This study aims to explore the role of primary care pharmacists, working in community pharmacies and general practices (GPs), in supporting the management of AF. Furthermore, this study investigates pharmacists' confidence in their knowledge and their attitudes towards incorporating AF-associated mobile apps use into their current practice. METHODS: A qualitative study was conducted, using one-to-one semi-structured, audio-recorded interviews with primary care pharmacists. The topic guide was developed based on pharmacy visits and included the most relevant constructs from the 'consolidated framework for implementation research (CFIR)'. All interviews were audio-recorded, transcribed verbatim and thematically analysed until saturation was achieved, guided by Braun and Clarke's 6-step research method. This study was given a favourable opinion on 5 September 2019 by the University of Birmingham (UOB) Research Ethics Committee (Reference ERN_19-0908). RESULTS: Thematic saturation was achieved after 11 interviews with primary care pharmacists (seven community pharmacists, and four GP pharmacists). Three main themes emerged relating to (1) the clinical role of pharmacists in the management of AF; (2) knowledge and awareness; and (3) prioritisation of resources. The first highlighted that primary care pharmacists were an underutilised resource within AF management. The second demonstrated that pharmacists, especially those based in the community, felt a lack of confidence in their knowledge of AF and its management, mainly community pharmacists due to other roles taking precedence over clinical roles. Both community and GP pharmacists expressed the need to have further training in this therapeutic area to be able to effectively support patients with AF. The third shed light on the pharmacists' views relating to the technological revolution in healthcare. Pharmacists expressed an interest in using apps to support their current practice. CONCLUSIONS: Primary care pharmacists supported an extended care to AF management from screening to consultations, yet the provision of such services remains limited and inconsistent. Future research should focus on understanding the ways in which pharmacists' role can be adapted toward greater involvement in clinical care.

The Attitudes of Egyptian Web-Based Health Information Seekers Toward Health Information Provided Through the Internet: Qualitative Study.

BACKGROUND: The internet has become an established source of health information for many Egyptian internet users. Understanding users' attitudes toward the benefits and limitations of web-based health information will explain the influence of this information on users' health-related behavior and decisions. OBJECTIVE: This qualitative study aims to understand the attitude of Egyptian internet users toward internet health information and to explore the impact of obtained health information on users' behavior and on their physician-patient relationship. METHODS: For this qualitative study, semistructured interviews were conducted with a total of 49 participants (41/49, 84% Egyptian internet users and 8/49, 16% physicians) who participated in focus groups or individual interviews. We used a thematic analysis approach to explain and demonstrate participants' views, thoughts, and experiences in using web-based health information. RESULTS: The internet has become an important source of health information in comparison with other health information sources and is the central theme that has emerged across the thematic analysis. The attitude toward the use of internet health was classified into three main themes: feeling toward web-based health information (with subthemes: favoring, disliking, neutral, or having ambivalence feelings), motivators to seek internet health information, and behavioral changes using internet health information (subthemes: confidence, satisfaction, and improved knowledge). Themes that emerged from physicians' interviews included the accessibility of the internet health information, good communication, and coordination of care between patients and their physicians, and the active engagement of patients with their management plan. CONCLUSIONS: The internet has become an essential source of health information for Egyptian adults. Internet health information can improve the patient-physician relationship, especially when users discuss the obtained health information with their physician. Internet health information provided seekers with social support and self-confidence when making health decisions.

Improving treatment outcomes for leprosy in Pernambuco, Brazil: a qualitative study exploring the experiences and perceptions of retreatment patients and their carers.

BACKGROUND: Brazil has a high leprosy burden and poor treatment outcomes (TOs), manifesting in high relapse rates. Pernambuco, an impoverished Brazilian state suffering notable geographical health inequalities, has 'hyperendemic' leprosy. Although current literature identifies barriers and facilitators influencing leprosy treatment compliance, inadequate investigation exists on other factors influencing TOs, including carers' roles and psycho-dermatological impact. This qualitative study explores experiences and perceptions of leprosy patients and their carers in Pernambuco, Brazil; to identify location-specific factors influencing TOs, and consequently inform future management. METHODS: 27, semi-structured, in-depth interviews were conducted with 14 patients and 13 carers. Participants were recruited using maximum variation and snowball sampling from three clinics in Petrolina, Pernambuco. Transcripts and field notes from both participant groups were separately analysed using conventional thematic and deviant case analysis. The University of Birmingham Internal Research Ethics Committee and Instituto Lauro de Souza Lima provided ethical approval. RESULTS: Two homologous sets of four, primary, interdependent themes influencing leprosy TOs emerged: 'personal factors'; 'external factors'; 'clinical factors'; and 'the healthcare professional (HCP)-patient-carer relationship'. Poor participant knowledge and lack of symptomatic relief caused patients to distrust treatment. However, because participants thought HCP-led interventions were vital for optimal TOs, patients were effectively persuaded to adhere to pharmaceutical treatments. High standard patient and population education facilitated treatment engagement by encouraging evidence-based medicine belief, and dispelling health myths and stigma. Healthcare, on occasions, was perceived as disorganised, particularly in resource-scarce rural areas, and for those with mental health needs. Participants additionally experienced incorrect/delayed diagnoses and poor contact tracing. Leprosy's negative socio-economic impact on employment - together with stigma, dependency and changing relationships - caused altered senses of identity, negatively impacting TOs. Better dialogue between patients, HCPs and carers facilitated individualised patient support. CONCLUSION: This study highlights the importance of: effective evidence-based leprosy education; communication between HCPs, patients and carers; state-funded support; and healthcare resource distribution. These findings, if prioritised on governmental scales, provide the valuable insight needed to inform location-specific management strategies, and consequently improve TOs. Future research should evaluate the effectiveness of these implementations. Failure to address these findings will hinder regional elimination efforts.

Social networks, health and identity: exploring culturally embedded masculinity with the Pakistani community, West Midlands, UK.

BACKGROUND: Migrants from South Asia living in developed countries have an increased risk for developing cardiovascular disease (CVD), with limited research into underlying social causes. METHODS: We used social capital as an interpretive lens to undertake analysis of exploratory qualitative interviews with three generations of at-risk migrant Pakistani men from the West Midlands, UK. Perceptions of social networks, trust, and cultural norms associated with access to healthcare (support and information) were the primary area of exploration. RESULTS: Findings highlighted the role of social networks within religious or community spaces embedded as part of ethnic enclaves. Local Mosques and gyms remained key social spaces, where culturally specific gender differences played out within the context of a diaspora community, defined ways in which individuals navigated their social spheres and influenced members of their family and community on health and social behaviours. CONCLUSIONS: There are generational and age-based differences in how members use locations to access and develop social support for particular lifestyle choices. The pursuit of a healthier lifestyle varies across the diverse migrant community, determined by social hierarchies and socio-cultural factors. Living close to similar others can limit exposure to novel lifestyle choices and efforts need to be made to promote wider integration between communities and variety of locations catering to health and lifestyle.

'If there were doctors who could understand our problems, I would already be better': dissatisfactory health care and marginalisation in superdiverse neighbourhoods.

How people in community settings describe their experience of disappointing health care, and their responses to such dissatisfaction, sheds light on the role of marginalisation and underlines the need for radically responsive service provision. Making the case for studying unprompted accounts of dissatisfaction with healthcare provision, this is an original analysis of 71 semi-structured interviews with healthcare users in superdiverse neighbourhoods in four European cities. Healthcare users spontaneously express disappointment with services that dismiss their concerns and fail to attend to their priorities. Analysing characteristics of these healthcare users show that no single aspect of marginalisation shapes the expression of disappointment. In response to disappointing health care, users sought out alternative services and to persuade reluctant service providers, and they withdrew from services, in order to access more suitable health care and to achieve personal vindication. Promoting normative quality standards for diverse and diversifying populations that access care from a range of public and private service providers is in tension with prioritising services that are responsive to individual priorities. Without an effort towards radically responsive service provision, the ideal of universal access on the basis of need gives way to normative service provision.