A care pathway approach to identifying factors that impact on diagnosis of heart disease in British Pakistani women

Purpose – The authors examined the cardiac care pathway with the aim of identifying factors that impact on diagnosis and treatment of coronary heart disease in British Pakistani women. Design/methodology/approach – This is an exploratory qualitative study. In depth interviews and focus groups with an opportunistic sample of Pakistani women and a purposive sample of clinicians working at different points along the care pathway were conducted. The authors used a pathways to care approach to illustrate how their individual and cumulative effect may contribute to differential receipt of treatment, including revascularisation, and health inequalities. Findings – Four major issues were identified: complex life circumstances; ‘‘atypical’’ presentation and ymptomatology; problems related to investigative testing; and poor communication. Mapping these barriers onto the Pathways to Care Model provided valuable insight into their impact on patients’progression through the different stages of the care pathway. Research limitations/implications – Adopting a care pathway approach demonstrated how individual factors have an impact at several points along the care pathway. It indicated where further, more detailed enquiry is merited and where intervention studies might usefully be directed to improve care. Practical implications – Examining the whole care pathway identified areas of service improvement that merit a co-ordinated response. Originality/value – The framework provided by the Pathways to Care Model offered insight into the causes of the previously observed attenuation in women’s progress along the cardiac diagnosis and treatment pathway and is an important first step to addressing this health inequality in a holistic way. Keywords Health, Gender, Inequalities, Women, Ethnicity, United Kingdom, Ethnic minorities, Personal health Paper type Research paper </p

Cloaked representations of a cloaked disease : individualised experiences of dealing with genital chlamydial infection.

The aim of this study was to explore the impact of chlamydial infection from the perspective of the individual. One-off, unstructured interviews were conducted, either in the Genitourinary Medicine or the Family Planning Clinic, with 50 individuals (40 females and 10 males) who had contracted this sexually transmitted infection (STI). A grounded theory approach was used. STI's have long since been associated with moral reprobation and social sanctioning, particularly in relation to females. They are diseases that other people get, associated with specific types and behaviours. This legacy has shaped their institutional management and it largely determined the individual and interpersonal responses of the study participants. However this effect was modified by the specific location of chlamydia within the hierarchy of STI's where ranking occurs primarily on the basis of curability and visibility. In these terms chlamydia was classed as a 'little' infection. On an individual level, diagnosis of infection was strongly associated with a sense of discordance and a spoiled identity, commonly expressed as feelings of dirt and contamination. Some felt a need to feel clean following infection; the test of cure fulfilled this function marking the transition from liminality. Intentions to prevent reinfection centred on routine or relationship based strategies. Long term concerns were limited to possible female infertility. On an interpersonal level, information control decisions were influenced by fear of disapproval and potential threat to social reputation. Notification of sexual partners, which is necessary to prevent re-infection of self and infection of others, was fraught with anxieties. lt created opportunities for moral positioning and was associated with accusations of culpability and intent. The health interface influenced responses to infection. The female experience commonly included management in primary care which was associated with insensitive management and inadequate information. The GUM clinic produced anxieties concerning usage but attendance was associated with confidence in contained and comprehensive infection management. These findings are discussed in relation to policies and practices that focus disproportionately upon women, particularly the chlamydia screening programme

Clarity, conviction and coherence supports buy-in to positive youth sexual health services: focused results from a realist evaluation

Background: There is a call for sexual health services to support young people achieve sexual wellbeing in addition to treating or preventing sexual ill-health. Progress towards realising this ambition is limited. This study aimed to contribute theory and evidence explaining key processes to support local delivery of positive youth sexual health services. Methods: A realist evaluation was conducted, comprising four research cycles, with a total of 161 data sources, primarily from the UK. Theory was refined iteratively using existing substantive theories, secondary and primary research data (including interviews, documentary analysis, feedback workshops and a literature search of secondary case studies). A novel explanatory framework for articulating the theories was utilised. Results: The results focused on local level buy-in to positive services. Positive services were initiated when influential teams had clarity that positive services should acknowledge youth sexuality, support young people's holistic sexual wellbeing and involve users in design and delivery of services, and conviction that this was the best or right way to proceed. How positive services were operationalised differed according to whether the emphasis was placed on meeting service objectives or supporting young people to flourish. Teams were able to effect change in local services by improving coherence between a positive approach and existing processes and practices. For example, that a) users were involved in decision making, b) multi-disciplinary professional working was genuinely integrated, and c) evidence of positive services' impact was gathered from a breadth of sources. New services were fragile. Progress was frequently stymied due to a lack of shared understanding and limited compatibility between characteristics of a positive approach and the wider cultural and structural systems including medical hegemony and narrow accountability frameworks. These challenges were exacerbated by funding cuts. Conclusions: This study offers clarity on how positive youth sexual health services may be defined. It also articulates theory explaining how dissonance, at various levels, between positive models of sexual health service delivery and established cultural and structural systems may restrict their successful inception. Future policy and practice initiatives should be theoretically informed and address barriers at societal, organisational and interpersonal levels to stimulate change

The experiences of parents of children diagnosed with cerebral adrenoleukodystrophy

Background: Adrenoleukodystrophy (ALD) is a rare X‐linked neurodegenerative disease, affecting the brain, spinal cord and adrenal cortex. Childhood cerebral ALD (CCALD) is the most severe form of disease, involving rapidly progressive neurological deterioration. The treatment option for CCALD is allogenic haemopoietic stem cell transplant, which is only successful for early‐stage disease. Parents' experiences of CCALD can inform healthcare delivery. Study aim: To detail the experiences of parents of children diagnosed with cerebral ALD. Methods: A descriptive qualitative study. Parents were recruited via a UK‐based community support organisation. Data collection involved single semi‐structured interviews structured around a topic guide and conducted remotely. Data were analysed using the thematic analysis approach. Findings: Twelve parents from 11 families with a total of 16 children with ALD contributed to the study. Their 16 children with ALD followed one of three disease pathways, determined by the extent of neurological damage at diagnosis. Three themes, and their respective sub themes, describe the pathways and what they meant for parents. ‘No possibility of treatment’ concerns situations when CCALD was diagnosed at an advanced stage, the landslide of deterioration parents witnessed and their efforts to maintain normality. ‘Close to the treatment threshold’ describes situations where a small treatment window required parents to make agonising treatment decisions. ‘Watching and waiting’ explains the challenges for parents when disease was detected early enabling children to benefit from timely treatment. Discussion: Parents' experiences were largely defined by the extent of cerebral damage at diagnosis, which determined the availability and success of treatment. There were specific challenges related to the three situations, indicating areas where support from health and care services may help parents deal with this devastating diagnosis. Conclusion: This study indicates support needs of parents across the spectrum of CCALD diagnoses and highlights the critical importance of early diagnosis

Parental experiences of raising a child with medium chain Acyl-CoA Dehydrogenase deficiency

Newborn screening enabling early diagnosis of medium chain acyl-CoA dehydrogenase deficiency (MCADD) has dramatically improved health outcomes in children with MCADD. Achieving those outcomes depends on effective management by parents. Understanding parental management strategies and associated anxieties and concerns is needed to inform provision of appropriate care and support. Semi structured interviews were conducted with a purposive sample of parents of children aged two to twelve years. Thematic analysis identified two main themes. Managing dietary intake examined how parents managed day-to-day dietary intake to ensure adequate intake and protection of safe fasting intervals. Managing and preventing illness events explored parental experiences of managing illness events and their approach to preventing these events. Management strategies were characterised by caution and vigilance and influenced by a lack of confidence in others to manage the condition. The study identifies the need for increased awareness of the condition, particularly in relation to emergency treatment

What consultation resources are available to support delivery of integrated sexual and reproductive health services? A scoping review

Background: Contraceptive and sexual healthcare is increasingly delivered in an integrated setting in the UK and worldwide, requiring staff to be competent in differing styles of delivery, and to have a wide knowledge base. Objectives: We did a scoping review of the literature for evidence of the resources that exist for healthcare professionals to guide or structure the process of conducting an integrated sexual and reproductive health (SRH) consultation. Eligibility criteria: Articles were included in the review if (1) their primary focus was a consultation resource related to one or more aspects of an SRH consultation and (2) they provided details of the resource and/or its application including evaluation of use. Sources of evidence: Peer-reviewed articles published in English, published non-peer-reviewed guides, and web-based guidelines addressing the conduct of a contraception or sexual health consultation were included. Date range: 1998-December 2018. Searches were carried out in the databases AMED (Ovid), ASSIA (ProQuest), CINAHL Complete (EBSCO), Cochrane Library (Wiley), HMIC (NHS Evidence), Medline (EBSCO), PsycINFO (Proquest) and Scopus (Elsevier) on 10 February 2017, and incremental searching performed until December 2018. Results: A total of 12 peer-reviewed journal articles, two web-published guidelines from the Faculty of Sexual & Reproductive Healthcare and three published, non-peer-reviewed resources were included. Conclusion: Many resources exist to guide either the contraceptive or sexual health consultations, but there is a lack of a comprehensive consultation resource to guide the conduct of an integrated consultation

Provision of positive sexual health services for young people: a realist evaluation

Background English and international policy calls for positive, comprehensive youth sexual health services (PCYSHS) that support young people to achieve sexual wellbeing. In practice, youth sexual health services are often oriented solely towards reducing unwanted conceptions and preventing sexually transmitted infections. This study aimed to develop theory and recommendations for practitioners to support delivery of PCYSHS. Methods A realist evaluation was undertaken to uncover what works, for whom, and under what conditions, to deliver PCYSHS. We developed concepts and initial theories, in which we combined existing substantive theory with a logic model based on stakeholder's tacit knowledge, observational visits, and data that were relevant to underlying causal processes, extracted from academic and policy literature (27 sources). Academic sources were identified via a systematic search of four electronic databases. Search terms were “sexual health”, combined with “sex positive”, “young people”, “service”, and synonyms (“reproductive health”, “sexual subjectivity”, “sexual rights”, “holistic”, “integrated”, “reproductive rights”, “preventative”, “comprehensive”, “young”, “youth” “teen*”, “adolescen*”, “intervention*”, “framework*”, “paradigm*”, “programme*”, “model*”, “trial*”, “pilot*”) with no date restrictions. We selected papers relating to whole system transformation to PCYSHS in developed countries, written in English. Papers that considered only education settings, one-off interventions, or information resources were excluded. Papers were appraised by rigour and relevance in accordance with realist methodology guidelines. Evidence was then gathered from case studies of three services in England that had attempted implementation of PCYSHS. Data were derived via stakeholder interviews (n=24), social and print media (15), service specifications (5), and evaluation and consultation documentation (5). Analysis of these data (Nvivo, version 10) was directed at substantiating, refining, or refuting the initial theories. Ethics approval was given by Sheffield Hallam University Research Ethics Committee. Findings 76 sources contributed to the development and testing of programme theories. The theories articulated how local buy-in to PCYSHS could be led by the following factors: clarity of both the concept and individual role; conviction in the approach to bring about positive change for young people; and coherence with local and national priorities. The theories suggested the mechanisms by which these factors work and showed the ways in which outcomes are contextually dependent. Interpretation This study explains some of the challenges of translating the policy ambition of PCYSHS into practice. The realist inquiry found theoretical mechanisms that might affect delivery of PCYSHS and the contextual conditions that could hinder or enable them. These theories can help inform the development and evaluation of PCYSHS initiatives