A Qualitative Study of Communication between Young Women with Disorders of Sex Development and Health Professionals

Background and Objectives. Health communication is a critical aspect of care for both providers and recipients having a direct influence on engagement and outcomes. Communicating which in this context includes talking and listening in order to share information or support young women to understand their DSD can be difficult especially since the topic area is sensitive. Methods. In this qualitative study thirteen young women (aged 14–19 years) with a disorder of sex development who engaged with health care professionals were purposively recruited between 2011 and 2012 from three specialist centres across the United Kingdom. The young women either were interviewed or completed a diary about their experiences of communication with a range of health care professionals. An interpretative phenomenological approach was used to analyse these data. Results. By analysis of data the young women were able to clearly articulate the qualities and skills health professional needed in relation to communication. Two main categories focused on the duty in which professionals have to share information and their role in supporting young women to manage this information. Discussion and Conclusion.The study results revealed that these young women with a DSD expected to meet skilled professionals who could recognise the emotional aspects of dialogues in the short and longer term

Evaluating a telehealth intervention for urinalysis monitoring in children with neurogenic bladder

Telehealth as a community-monitoring project within children’s urology care is an innovative development. There is limited evidence of the inclusion of staff and parents in the early-stage development and later adoption of telehealth initiatives within routine urological nursing care or families’ management of their child’s bladder. The aim was to explore the experiences of key stakeholders (parents, clinicians, and technical experts) of the proof of concept telehealth intervention in terms of remote community-based urinalysis monitoring by parents of their child’s urine. A concurrent mixed-methods research design used soft systems methodology tools to inform data collection and analysis following interviews, observation, and e-surveys with stakeholders. Findings showed that the parents adopted aspects of the telehealth intervention (urinalysis) but were less engaged with the voiding diary and weighing. The parents gained confidence in decision-making and identified that the intervention reduced delays in their child receiving appropriate treatment, decreased the time burden, and improved engagement with general practitioners. Managing the additional workload was a challenge for the clinical team. Parental empowerment and self-efficacy were clear outcomes from the intervention. Parents exercised their confidence and control and were selective about which aspects of the intervention they perceived as having credibility and which they valued

“You get to know the people and whether they’re talking sense or not”: Negotiating trust on health-related forums

AbstractThe internet is increasingly being used as a source of health advice and information by individuals with long term conditions (LTCs). Specifically, online forums allow people to interact with others with similar conditions. However, it is not clear how online health information is assessed by those with LTCs. This study aims to address this gap by exploring how individuals with contested and uncontested LTCs utilise internet forums. Semi-structured interviews were conducted with 20 participants with ME/CFS and 21 participants with type 1 and 2 diabetes and analysed using thematic analysis. Participants were recruited via online and offline routes, namely forums, email lists, newsletters, and face-to-face support groups. The findings indicate that the use of online forums was a complex and nuanced process and was influenced by a number of individual and illness-specific factors. Participants trusted those with similar experiences and perspectives as themselves, while also valuing conventional biomedical information and advice. By accessing support online, forum users were able to draw on a personalised form of support based on the lived experiences of their peers. However, the role of digital literacy in developing and maintaining online relationships must be acknowledged

Evolving ‘self’-management: exploring the role of social network typologies on individual long-term condition management

BackgroundWhilst there has been a focus on the importance of social support for managing long‐term conditions, there has been little specific focus on the characteristics of social networks that shape self‐management. Policy emphasis is placed on individual responsibility for self‐care, and this influences commissioning of health‐care services. Assumptions are often made by policymakers about accessibility and preference for support and the influence of the social context on chronic illness management. ObjectiveTo examine the social networks of individuals with long‐term conditions and identify how the characteristics of their composition influences support needs. Design, setting and participantsThirty participants completed initial face‐to‐face in‐depth interviews, telephone follow‐ups and final face‐to‐face interviews in the north‐west of England. A longitudinal qualitative design was used to elicit the subtle changes in relationships over a year. FindingsThe findings suggest that the relationships which constitute a social network influence perceived support needs and attitudes to self‐management. The amalgamation of relationships was characterized into three network typologies (family focused, friend focused or health‐care professional focused) according to which types of relationships were dominant. In the absence of support, accounts highlighted a small number of substitutes who could provide support at times of critical need. DiscussionThis study challenges the notion of ‘self’‐management as an individual construct as many of the practices of illness management involved the support and/or negotiation of roles with others. By examining the nuances of relationships, this study has highlighted the tacit boundaries of practical and emotional support provision.<br/

Tea, talk and technology: patient and public involvement to improve connected health ‘wearables’ research in dementia

Plain English summary There are a growing number of mobile phones, watches and electronic devices which can be worn on the body to track aspects of health and well-being, such as daily steps, sleep and exercise. Dementia researchers think that these devices could potentially be used as part of future research projects, for example to help spot changes in daily activity that may signal the early symptoms of dementia. We asked a range of older people, including people living with dementia and their carers, to participate in interactive discussions about how future participants might find using these devices as part of research projects. We also invited volunteers to borrow a range of devices to test at home, giving them further insights. Discussions revealed that people were generally supportive of this type of research, provided they gave informed consent and that devices were discreet, comfortable and easy to use. They also valued technical support and regular feedback on study progress to encourage ongoing participation. These findings were used to develop a pool of devices for researchers, with computer software and written guidance to help plan, design and support studies. Our work shows that when given the right opportunities, people who are affected by dementia can provide valuable insights that can enhance the design, delivery and quality of future research. Abstract Background Increasingly, researchers are recognising the potential for connected health devices, including smartphones and smartwatches, to generate high resolution data about patterns of daily activity and health outcomes. One aim of the Dementias Platform UK (DPUK) project is to provide researchers with a secure means to collect, collate and link data generated by such devices, thereby accelerating this type of research in the field of dementia. We aimed to involve members of the public in discussions about the acceptability and feasibility of different devices and research designs to inform the development of a device pool, software platform and written guidance to support future studies. Methods Over 30 people attended a series of interactive workshops, drop-in sessions and meetings in Greater Manchester. This included people living with dementia and cognitive impairments, carers and people without memory problems. Discussions were tailored to suit different audiences and focused on the feasibility and acceptability of a range of different wearable devices and research designs. We also invited volunteers to borrow a device to test at home, enabling further insights from hands-on interactions with devices. Results Discussions revealed that people were supportive of connected health dementia research in principle, provided they gave informed consent and that devices were discreet, comfortable and easy to use. Moreover, they recommended technical support and regular feedback on study progress to encourage ongoing participation. Conclusion By using a range of discussion-based and practical activities, we found it was feasible to involve people affected by dementia and use their insights to shape the development of a software platform and device pool to support future connected health dementia research. We recommend that researchers planning such studies in future pay adequate attention to designing suitable participant information, technical support and mechanisms of providing study progress updates to support sustained engagement from participants

Parents of children with ambiguous genitalia : stories of experiences of reconstructive genital surgeries and finding harmony

Aim: To explore and understand parents' experiences of their child's genital ambiguity and the reconstructive surgeries for ambiguous genitalia that occurred in infancy and middle childhood. Background: The determination of sex and gender for a child born with ambiguous genitalia is an extremely complex medical and social process. Academic debate, professional practice, the law and increased political and ethical debate have all more recently challenged the evidence base for practice. Currently the 'optimal gender policy' and the 'informed consent policy' drive treatment options. Little research has been conducted to understand the significance gender ambiguity has in parents' lives and how the child's genital surgery affects parents. Methods: An exploratory design of narrative inquiry was chosen and data were collected through eighteen in-depth narrative interviews with a purposive non-random sample of fifteen parents of 11 children (aged 0-11 years). Findings: Narrative analysis resulted in three keystone stories which contained in total eight aggregate stories and twenty foundational stories. The three keystone story themes were firstly, parents' stories about their child. Secondly, stories about being a parent of a child with AG and finally stories about healthcare professionals. Interpretation and synthesis of the three keystone stories revealed three core elements fundamental to parents stories; shock protection and anxiety. Parents had to develop new skills in order to deal with the challenges of living with a child with AG. Parents endeavoured to find a sense of harmony from their experiences of shock, anxiety and the need to protect their child. Harmony is a concept that brought consistency and agreement together resulting in parents embracing their experiences holistically and giving their experiences meaning. Conclusion: Parents overcame the tensions inherent in their experience of their child's AG and found a sense of harmony which has not previously been described in the literature.EThOS - Electronic Theses Online ServiceGBUnited Kingdo

Implementing a digital patient feedback system: an analysis using normalisation process theory

Background: Patient feedback in the English NHS is now widespread and digital methods are increasingly used. Adoption of digital methods depends on socio-technical and contextual factors, alongside human agency and lived experience. Moreover, the introduction of these methods may be perceived as disruptive of organisational and clinical routines. The focus of this paper is on the implementation of a particular digital feedback intervention that was co-designed with health professionals and patients (the DEPEND study). Methods: The digital feedback intervention was conceptualised as a complex intervention and thus the study focused on the contexts within which it operated, and how the different participants made sense of the intervention and engaged with it (or not). Four health care sites were studied: An acute setting, a mental health setting, and two general practices. Qualitative data was collected through interviews and focus groups with professionals, patients and carers. In total 51 staff, 24 patients and 8 carers were included. Forty-two observations of the use of the digital feedback system were carried out in the four settings. Data analysis was based on modified grounded theory and Normalisation Process Theory (NPT) formed the conceptual framework. Results: Digital feedback made sense to health care staff as it was seen as attractive, fast to complete and easier to analyse. Patients had a range of views depending on their familiarity with the digital world. Patients mentioned barriers such as kiosk not being visible, privacy, lack of digital know-how, technical hitches with the touchscreen. Collective action in maintaining participation again differed between sites because of workload pressure, perceptions of roles and responsibilities; and in the mental health site major organisational change was taking place. For mental health service users, their relationship with staff and their own health status determined their digital use. Conclusion: The potential of digital feedback was recognised but implementation should take local contexts, different patient groups and organisational leadership into account. Patient involvement in change and adaptation of the intervention was important in enhancing the embedding of digital methods in routine feedback. NPT allowed for a in-depth understanding of actions and interactions of both staff and patients

Comparative 4-year risk and type of hospital admission among homeless and housed emergency department attendees: longitudinal study of hospital records in England 2013-2018.

From Europe PMC via Jisc Publications RouterHistory: ppub 2021-07-01, epub 2021-07-26Publication status: PublishedObjectivesPeople experiencing homelessness are frequent users of secondary care. Currently, there is no study of potentially preventable admissions for homeless patients in England. We aim to estimate the number of potentially preventable hospital admissions for homeless patients and compare to housed patients with similar characteristics.DesignRetrospective matched cohort study.SettingHospitals in England.Participants16 161 homeless patients and 74 780 housed patients aged 16-75 years who attended an emergency department (ED) in England in 2013/2014, matched on the basis of age, sex, ED attended and primary diagnosis.Primary and secondary outcome measuresAnnual counts of admissions, emergency admissions, ambulatory care-sensitive (ACS) emergency admissions, acute ACS emergency admissions and chronic ACS emergency admissions over the following 4 years (2014/2015-2017/2018). We additionally compare the prevalence of specific ACS conditions for homeless and housed patients.ResultsMean admissions per 1000 patients per year were 470 for homeless patients and 230 for housed patients. Adjusted for confounders, annual admissions were 1.79 times higher (incident rate ratio (IRR)=1.79; 95% CI 1.69 to 1.90), emergency admissions 2.08 times higher (IRR=2.08; 95% CI 1.95 to 2.21) and ACS admissions 1.65 times higher (IRR=1.65; 95% CI 1.51 to 1.80), compared with housed patients. The effect was greater for acute (IRR=1.78; 95% CI 1.64 to 1.93) than chronic (IRR=1.45; 95% CI 1.27 to 1.66) ACS conditions. ACS conditions that were relatively more common for homeless patients were cellulitis, convulsions/epilepsy and chronic angina.ConclusionsHomeless patients use hospital services at higher rates than housed patients, particularly emergency admissions. ACS admissions of homeless patients are higher which suggests some admissions may be potentially preventable with improved access to primary care. However, these admissions comprise a small share of total admissions

Parents of Children with Ambiguous Genetalia: stories of experiences of reconstructive gential surgeries and finding harmony

Title: Parents of children with ambiguous genitalia: Stories of experiences of reconstructive genital surgeries and finding harmony. Aim: To explore and understand parents' experiences of their child's genital ambiguity and the reconstructive surgeries for ambiguous genitalia that occurred in infancy and middle childhood. Background: The determination of sex and gender for a child born with ambiguous genitalia is an extremely complex medical and social process. Academic debate, professional practice, the law and increased political and ethical debate have all more recently challenged the evidence base for practice. Currently the 'optimal gender policy' and the 'informed consent policy' drive treatment options. Little research has been conducted to understand the significance gender ambiguity has in parents' lives and how the child's genital surgery affects parents. Methods: An exploratory design of narrative inquiry was chosen and data were collected through eighteen in-depth narrative interviews with a purposive non-random sample of fifteen parents of 11 children (aged 0-11 years). Findings: Narrative analysis resulted in three keystone stories which contained in total eight aggregate stories and twenty foundational stories. The three keystone story themes were firstly, parents' stories about their child. Secondly, stories about being a parent of a child with AG and finally stories about healthcare professionals. Interpretation and synthesis of the three keystone stories revealed three core elements fundamental to parents stories; shock protection and anxiety. Parents had to develop new skills in order to deal with the challenges of living with a child with AG. Parents endeavoured to find a sense of harmony from their experiences of shock, anxiety and the need to protect their child. Harmony is a concept that brought consistency and agreement together resulting in parents embracing their experiences holistically and giving their experiences meaning. Conclusion: Parents overcame the tensions inherent in their experience of their child's AG and found a sense of harmony which has not previously been described in the literature