The social meanings and implications of the Beta-thalassaemia trait among South Asian women in England.

The AIMS of this study are to: (1) To explore how South Asian women (those who have ethnic origins in India, Pakistan or Bangladesh) make sense of the beta-thalassaemia trait in the context of their everyday experiences and, in turn, how these experiences impact their identities. (2) To ascertain the extent of the assimilation and management of genetic information by women of South Asian origin. (3) To contribute towards the debate on the provision of culturally sensitive screening policies and the dissemination of genetic information and to analyse ways in which such policies can be improved. STUDY DESIGN: A qualitative modified grounded theory study comprising of semi-structured interviews conducted in English, Urdu, Punjabi, Sylheti and Hindi. Five geographical sites were selected for the study: three in London, one in the West Midlands and a further site in Northern England based on their high density of South Asian populations as indicated by the 1991 UK Census data. Purposive sampling ensured diversity in participant backgrounds (e.g. socio-economic, religion, marital, child’s health and age). Interviews were translated and transcribed by the researcher and the computer software NVivo was used to analyse the data. SAMPLE: Forty-one South Asian women who had been diagnosed with the beta-thalassaemia trait and two haemoglobinopathy nurse specialists who undertook the role of counselling. FINDINGS: The empirical findings revealed the importance of identity, faith, culture and diversity in how women managed the knowledge of the beta thalassaemia trait. Common perceptions held by health service staff of South Asian women being homogenous in attitudes to prenatal diagnosis and termination; as subjugated to their husbands in decision-making; and as fatalistic because of their religious convictions were shown by this study to be misconceived. South Asian women actively managed their trait within the context of their everyday socio-cultural and religious experiences. For example, liberal notions of ‘informed choice’ were found not to take account of the institutional importance of motherhood for South Asian women living in the UK. Their experience of beta-thalassaemia trait was also mediated through relations of power, both within kinship networks and between family and health professionals. In making sense of the genetic identities accorded to them by health professionals, they also re-interpreted, negotiated and contested the ethos of the screening and prenatal testing processes. The participants used power and positionality to relocate their sense of genetic responsibility away from the self onto others, employing geographical and cultural explanations to justify their apparent inaction in the face of biomedical expectations and assumptions. CONCLUSION: Women acted according to their perceptions of how others would perceive them if their trait were to be disclosed and as a result they presented and constructed the trait in order to preserve the ‘self’ within the context of their everyday life experiences which has implications for the delivery of appropriately targeted screening and health services

Social support for South Asian Muslim parents with life-limiting illness living in Scotland:a multiperspective qualitative study

Objective: To explore experiences of social support needs among South Asian Muslim patients with life-limiting illness, living in Scotland, who are parents of young children. Design: Secondary analysis of data from a multiperspective, longitudinal Scottish study involving in-depth semistructured interviews with patients, their nominated carers and healthcare professionals. Data were analysed using interpretive phenomenological analysis. Setting: Edinburgh, Scotland. Participants: South-Asian Muslim patients with life-limiting illness with children under the age of 18 (n=8), their carer (n=6) and their healthcare professional. Main outcome measures Access and provision of social support in palliative care. Results: Open-ended qualitative interviews identified four main themes: (1) parental sadness over being unable to provide tangible support; (2) parental desire to continue to provide emotional support; (3) limited availability of informal social support networks; and (4) differing perspectives between healthcare professionals and patients on patient access to social support sources, with a subtheme being the capacity of male carers to provide social support. South-Asian parents at the end of life had limited access to extended-network support. Gender roles appeared as challenging for healthcare providers who at times overestimated the amount of support a female carer could provide and underestimated the amount of support male carers provided. Implications for practice include the need for greater awareness by healthcare providers of the social support needs of ethnic minority and migrant parents with life-limiting illnesses and especially an awareness of the importance of the role of male and female carers. Further research is needed to explore how the timing of migration impacts the need for and availability of tangible and emotional informal social support among ethnic minority parents with life-limiting illness

Clinical Data from Home to Health Centre: the Telehealth Curation Lifecycle

This case study has been produced for the Digital Curation Centre (DCC) SCARP project, funded by the Joint Information Systems Committee (JISC) to investigate disciplinary attitudes and approaches to data deposit. The study looks at the data curation lifecycle in Telehealth research. Telehealth, or telecare, is an emerging sub-domain of eHealth, and the report profiles current practices in several telehealth pilot projects. Data curation is at an embryonic stage but can draw on related eHealth initiatives and clinical data management practices, and the report considers the infrastructure needed for data curation in this field of research and practice

Factors affecting continuation of clean intermittent catheterisation in people with multiple sclerosis: results of the COSMOS mixed-methods study

Background:  Clean intermittent catheterisation (CIC) is often recommended for people with multiple sclerosis (MS).  Objective:  To determine the variables that affect continuation or discontinuation of the use of CIC.  Methods:  A three-part mixed-method study (prospective longitudinal cohort (n = 56), longitudinal qualitative interviews (n = 20) and retrospective survey (n = 456)) was undertaken, which identified the variables that influenced CIC continuation/discontinuation. The potential explanatory variables investigated in each study were the individual’s age, gender, social circumstances, number of urinary tract infections, bladder symptoms, presence of co-morbidity, stage of multiple sclerosis and years since diagnosis, as well as CIC teaching method and intensity.  Results:  For some people with MS the prospect of undertaking CIC is difficult and may take a period of time to accept before beginning the process of using CIC. Ongoing support from clinicians, support at home and a perceived improvement in symptoms such as nocturia were positive predictors of continuation. In many cases, the development of a urinary tract infection during the early stages of CIC use had a significant detrimental impact on continuation.  Conclusion:  Procedures for reducing the incidence of urinary tract infection during the learning period (i.e. when being taught and becoming competent) should be considered, as well as the development of a tool to aid identification of a person’s readiness to try CIC

Vulnerability and access to care for South Asian Sikh and Muslim patients with life limiting illness in Scotland: prospective longitudinal qualitative study

Objectives To examine the care experiences of South Asian Sikh and Muslim patients in Scotland with life limiting illness and their families and to understand the reasons for any difficulties with access to services and how these might be overcome

Curating Complex, Dynamic and Distributed Data: Telehealth as a Laboratory for Strategy

Telehealth monitoring data is now being collected across large populations of patients with chronic diseases such as stroke, hypertension, COPD and dementia. These large, complex and heterogeneous datasets, including distributed sensor and mobile datasets, present real opportunities for knowledge discovery and re-use, however they also generate new challenges for curation. This paper uses qualitative research with stakeholders in two nationally-funded telehealth projects to outline the perceptions, practices and preferences of different stakeholders with regard to data curation. Telehealth provides a living laboratory for the very different challenges implicit in designing and managing data infrastructure for embedded and ubiquitous computing. Here, technical and human agents are distributed, and interaction and state change is a central component of design, rather than an inconvenient challenge to it. The authors argue that there are lessons to be learned from other domains where data infrastructure has been radically rethought to address these challenge

The practice of hope: A longitudinal, multi-perspective qualitative study among South Asian Sikhs and Muslims with life-limiting illness in Scotland

ObjectivesWe explored the role of faith and religious identities in shaping end of life experiences in South Asian Muslims and Sikhs with life-limiting illnesses.DesignSecondary analysis of data from a longitudinal, multi-perspective qualitative study of the experience of life-limiting illness and access to palliative care services among South Asian Sikhs and Muslims in Scotland. Up to three semi-structured interviews were conducted with 25 participants, 15 family members and 20 health care professionals over a period of 18 months. Analysis was informed by Mattingly's theory on hope.ResultsHope emerged as a central construct in the accounts of illness constructed by the participants as they struggled to make sense of and uphold a meaningful life. Clinical encounters and, for some, religious beliefs served as sources of hope for participants. Hope unfolded as an active process that enabled them to live with the personal and in particular the social ramifications of their illness. Changing images of hope were formulated and reflected as illness progressed or treatments failed. These ranged from hoping for cure, prolonged life, the regaining of lost capabilities needed to fulfil social roles, or at times death when suffering and the consequences for the family became too hard to bear.ConclusionsFor those suffering from a life-limiting illness, sustaining hope is a complex challenge. The social character of hope is evident as it focuses on envisioning a life that is worth living, not only for oneself, but most importantly for social relations. Continuity in care at the end of life and a holistic approach is important in order to enable patients to articulate complex and changing notions of hope that at times are silenced within families, and for patients to feel confident in discussing the possible role of religious beliefs in shaping personal notions of hope.Chief Scientist's Office of the Scottish Government Health Department.Scopu

First comprehensive report on distribution of histologically confirmed oral and maxillofacial pathologies; a nine year retrospective study

Objective: To report the distribution of oral and maxillofacial pathologies diagnosed histologically in laboratory. Methods: The retrospective descriptive cross-sectional study was conducted at Rehman Medical Institute, Peshawar, Pakistan, and comprised biopsied lesions submitted to the institutional laboratory from 2010 to 2019. Data on gender, age, site of the lesion and histopathological diagnosis was retrieved from the records. Data was analysed using Microsoft Excel. Results: Of the 986 histologically confirmed cases, 545(55.27%) related to males and 441(44.72%) to females. The overall mean age of the patients was 43.20+19.85. Tongue was the most affected site 159(16.1%). The most common diagnostic category was malignant tumours 338(34%), followed by salivary gland pathology 162(16%), and cysts and odontogenic tumours 138(14%). The most common histopathological finding was oral squamous cell carcinoma 249(25.2%), and pleomorphic adenoma was the most common benign tumour 103(10.4%). Conclusion: Oral squamous cell carcinoma was the most common malignancy, while pleomorphic adenoma was the most common benign tumour. Key Words: Oral and maxillofacial lesions, Prevalence, Histopathology, Benign lesions, Malignant lesions

MSJ768722_Appendix_4 – Supplemental material for Factors affecting continuation of clean intermittent catheterisation in people with multiple sclerosis: Results of the COSMOS mixed-methods study

<p>Supplemental material, MSJ768722_Appendix_4 for Factors affecting continuation of clean intermittent catheterisation in people with multiple sclerosis: Results of the COSMOS mixed-methods study by Doreen McClurg, Carol Bugge, Andrew Elders, Tasneem Irshad, Suzanne Hagen, Katherine N Moore, Brian Buckley and Mandy Fader in Multiple Sclerosis Journal</p