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Children's independent mobility (CIM) is the freedom of children to move around their neighbourhood or community without adult supervision. The aim of this study was to explore experiences with CIM from the perspectives of children and their parents living in rural and remote areas of British Columbia, Canada. Semi-structured interviews were conducted with 21 parent–child dyads or triads (45 participants). Child participants aged 7–12 were invited to create and describe drawings, maps, or take images of their independent mobility. Artwork and interview transcripts were analysed following an inductive thematic approach and mapped to the social-ecological model. We developed four themes to describe rural and remote family perspectives on CIM: (1) natural places, spaces, and forces; (2) embracing informal and unstructured play destinations; (3) decision-making and knowing when they are ready; (4) neighbourhood and community environments. Children identified several environmental characteristics impacting their independent mobility including wildlife, seasonal weather patterns, and lack of destinations. Parents reported the environment of rural communities, including neighbourhood cohesiveness and people looking out for each other, as being supportive of CIM. To promote CIM in rural and remote areas, efforts should focus on providing education on wildlife encounters, creating safe and interesting destinations for play, and consider children's safety and connectivity in road design. [ABSTRACT FROM AUTHOR]

Introduction: Remote (digital and/or telephone) access and consultation models are being driven by national policy with the goal being that the National Health Service operate on a remote‐first (digital‐first) basis by 2029. Previous research has suggested that remote methods of access to care and consulting may act to widen health inequalities for certain patients and/or groups such as those from ethnic minorities. South Asian (SA) patients comprise the largest ethnic minority group in England. Understanding the experiences and needs of this group is critical to ensuring that general practice can deliver equitable, quality health care. Methods: Qualitative study. 37 participants (from Indian, Pakistani and/or Bangladeshi background) were recruited to take part in either in‐person preferred language focus groups or remote semistructured interviews in the English language. Thematic analysis was conducted to identify themes in the qualitative data. Findings: Three major interlinked themes were identified: (1) reduced access, (2) reduced patient choice and (3) quality and safety concerns. The findings highlight access issues split by (i) general issues with appointment access via any remote means and (ii) specific issues related to language barriers creating additional barriers to access and care. Some patients valued the convenience of remote access but also raised concerns regarding appointment availability and reduced patient choice. Face‐to‐face consultations were preferable but less available. The findings underscore how participants perceived remote care to be of lesser quality and less safe. Concerns were greatest for those with limited English proficiency (LEP), with the removal of non‐verbal aspects of communication and 'hands‐on' care leading to perceptions of reduced psycho‐social safety. Conclusion: SA patients' experiences of remote‐led primary care access and care delivery were negative with only a minority viewing it positively and for certain limited scenarios. Face‐to‐face models of care remain the preferred mode of consultation, particularly for those with LEP. Hybrid models of access offer patients the greatest choice, and are likely to meet the varying needs of the South‐Asian patient population going forwards. The remote first approach to primary care may be achievable as a service ideal, but its limitations need to be recognised and accounted for to ensure that primary care can be an equitable service, both now and in the future. Public Contribution: Members of the public were involved in all phases of research in the study. This included co‐working in partnership throughout the study including, reviewing patient‐facing documents, recruiting participants, data facilitation, translation work, interpretation of the data and co‐authors on this manuscript. The key to the success of our study was collaborative teamwork, which involved experienced members of the public with SA cultural knowledge working together with and integral to the research team for all components. [ABSTRACT FROM AUTHOR]

Introduction: Long-term conditions are a major burden on health systems. One way to facilitate more research and better clinical care among patients with long-term conditions is to collect accurate data on their daily symptoms (patient-generated health data) using wearable technologies. Whilst evidence is growing for the use of wearable technologies in single conditions, there is less evidence of the utility of frequent symptom tracking in those who have more than one condition. Aims: To explore patient views of the acceptability of collecting daily patient-generated health data for three months using a smartwatch app. Methods: Watch Your Steps was a longitudinal study which recruited 53 patients to track over 20 symptoms per day for a 90-day period using a study app on smartwatches. Semi-structured interviews were conducted with a sub-sample of 20 participants to explore their experience of engaging with the app. Results: In a population of older people with multimorbidity, patients were willing and able to engage with a patient-generated health data app on a smartwatch. It was suggested that to maintain engagement over a longer period, more 'real-time' feedback from the app should be available. Participants did not seem to consider the management of more than one condition to be a factor in either engagement or use of the app, but the presence of severe or chronic pain was at times a barrier. Conclusion: This study has provided preliminary evidence that multimorbidity was not a major barrier to engagement with patient-generated health data via a smartwatch symptom tracking app. [ABSTRACT FROM AUTHOR]

Objectives To establish the acceptability and feasibility of collecting daily patient-generated health data (PGHD) using smartphones and integrating PGHD into the electronic health record, using the example of RA. Methods The Remote Monitoring of RA smartphone app was co-designed with patients, clinicians and researchers using qualitative semi-structured interviews and focus groups, including selection of question sets for symptoms and disease impact. PGHD were integrated into the electronic health record of one hospital and available in graphical form during consultations. Acceptability and feasibility were assessed with 20 RA patients and two clinicians over 3 months. A qualitative evaluation included semi-structured interviews with patients and clinicians before and after using the app, and audio-recordings of consultations to explore impact on the consultation. PGHD completeness was summarized descriptively, and qualitative data were analysed thematically. Results Patients submitted data on a median of 91% days over 3 months. Qualitative analysis generated three themes: RA as an invisible disease; providing the bigger picture of RA; and enabling person-centred consultations. The themes demonstrated that the system helped render patients' RA more visible by providing the 'bigger picture', identifying real-time changes in disease activity and capturing symptoms that would otherwise have been missed. Graphical summaries during consultations enabled a more person-centred approach whereby patients felt better able to participate in consultations and treatment plans. Conclusion Remote Monitoring of RA has uniquely integrated daily PGHD from smartphones into the electronic health record. It has delivered proof-of-concept that such integrated remote monitoring systems are feasible and can transform consultations for clinician and patient benefit. [ABSTRACT FROM AUTHOR]

Background: The benefit of a "diagnosis" of pre-diabetes in very elderly patients is debated. How clinicians manage pre-diabetic blood results in these patients is unknown. This study aims to understand how clinicians are "diagnosing" older patients with pre-diabetic blood parameters. Methods: Semi-structured interviews and focus groups with health care staff (24 total participants) were conducted in the north of England. Interviews and focus groups were recorded, transcribed and analysed thematically. A grounded theory approach was taken with the theory of candidacy being used as a sensitising concept through which questions were framed and results interpreted. Results: There is a complex system of competing pressures that influence a clinician in deciding whether, and in what way, to inform a very elderly patient that they have pre-diabetes. The majority of clinicians adjust their management of pre-diabetes to the age and perceived risk/benefit for the patient. Whilst some clinicians choose not to inform certain patients of their blood results, many clinicians maintain, what could be seen as a somewhat paradoxical approach of labeling all older patients with pre-diabetes but downplaying the significance to the patient. The policy, organisational context, workload and professional constraints under which clinicians work, play a significant role in shaping how they deal with pre-diabetic blood results in the very elderly. Conclusion: There has been recent acknowledgement of how policy and organisational context frames decision-making, but there is a lack of evidence on how this influences uncertainty and dilemmas in decision-making in practice. These findings add further weight for the argument that treatment burden should be included in clinical guidelines. [ABSTRACT FROM AUTHOR]

Background: Person‐centredness is important in delivering care for long‐term conditions. New models of care aim to co‐ordinate care through integration of health and social care which require new ways of working, often remotely from the patient. Objective: To describe how person‐centred care is enacted within multidisciplinary groups (MDGs) created as part of a new service, integrating health and social care for older people. Methods: We followed the implementation of eight neighbourhood MDGs, observing and interviewing staff from three MDGs at different phases of programme implementation using semi‐structured topic guides. Results: Thirty‐four MDG meetings were observed and 32 staff interviewed. Three core themes were identified which impacted on enactment of person‐centred care: the structural context of MDGs enabling person‐centred care; interaction of staff and knowledge sharing during the MDG meetings; and direct staff involvement of the person outside the MDG discussion. Conclusions: This study provides new insights into attempts to enact person‐centred care within a new model of service delivery. Teams did what they could to enact person‐centred care in the absence of the "real" patient within MDG meetings. They were successful in delivering and co‐ordinating some aspects of care (eg prompting medication reviews, referring to social worker, health improvement and arranging further multidisciplinary team meetings for complex cases). This "absence of patients" and time pressures within the MDGs led to reliance on the "virtual" record, enhanced by additional "soft" knowledge provided by staff, rather than ensuring the patient's voice was included. [ABSTRACT FROM AUTHOR]

Context The use of the internet for health information by those with long-term conditions is growing. It has been argued that this represents a form of empowerment by patients, as it enables them to control the content and flow of the information available to them. To explore this, the use of online discussion groups by those with diabetes was examined. Method Semi-structured interviews were conducted with 21 participants with type 1 and 2 diabetes and analysed using thematic analysis. Participants were recruited via online and offline routes, namely discussion boards, newsletters, and research networks related to diabetes. Results By drawing on the advice, information, and support shared online, participants were empowered to position themselves as active participants in their own health care and to further engage with health-care professionals. Conclusion The findings indicate that forums can play a valuable role in aiding and motivating individuals in the daily management diabetes and highlight how this support is used to complement formal health services. However, more work needs to be carried out to determine to explore when and under what circumstances online support may be particularly beneficial to those with long-term conditions. [ABSTRACT FROM AUTHOR]

Background and aims: Support of personal recovery represents the aim for many modern mental health services. There is a lack of conceptual clarity around the application of the term however and this is particularly problematic with regard to the personality disorder diagnoses. This study sought to review the existing qualitative methods literature in relation to the experience of personal recovery in personality disorder. Methods: A systematic literature search was conducted. Identified studies were incorporated through meta-synthesis in order to develop higher order descriptive themes representative of the individual experience described within included studies. Results: Three studies were identified and incorporated into the meta-synthesis. Three novel higher order themes were developed: Safety and containment as a prerequisite to recovery, social networks and autonomy in the recovery process and identity construction as a process of change. Conclusion: Personal recovery in personality disorder is revealed as a complex process reflecting both personal and social experiences or desires. These findings have important implications for clinical practice – emphasising the need to work closely with individuals and to develop an understanding of both their social experience and networks. Further research, taking greater account of social context in the recovery process, is necessary. [ABSTRACT FROM AUTHOR]

This study explores the ways in which patients make sense of 'safety' in the context of primary medical care. Drawing on qualitative interviews with primary care patients, we reveal patients' conceptualisation of safety as fluid, contingent, multi-dimensional, and negotiated. Participant accounts drew attention to a largely invisible and inaccessible (but taken for granted) architecture of safety, the importance of psycho-social as well as physical dimensions and the interactions between them, informal strategies for negotiating safety, and the moral dimension of safety. Participants reported being proactive in taking action to protect themselves from potential harm. The somewhat routinised and predictable nature of the primary medical care consultation, which is very different from 'one off' inpatient spells, meant that patients were not passive recipients of care. Instead they had a stock of accumulated knowledge and experience to inform their actions. In addition to highlighting the differences and similarities between hospital and primary care settings, the study suggests that a broad conceptualisation of patient safety is required, which encompasses the safety concerns of patients in primary care settings. [ABSTRACT FROM AUTHOR]

Aim To understand the experiences of young women with a disorder of sex development when sharing information about their body with healthcare professionals, friends and intimate partners. Background Disorders of sex development are lifelong conditions that create bodily difference such as absence of reproductive organs which can impact on young women's fertility and sexual experiences. Design Interpretive phenomenological analysis with thirteen young women (14-19 years old) with a disorder of sex development. Methods The young women chose to participate in either a face-to-face semi-structured interview or to complete a paper diary between 2011-2012. Results A superordinate theme focusing on the meaning bodily differences held for these young women is presented through three themes: self-awareness and communicating this to others; actualizing intimacy; and expressing meaning of altered fertility to self or professionals or partners. During early adolescence, the young women were guarded and reticent about sharing personal information about their disorder of sex development but as they moved towards adulthood, some of the young women learnt to engage in conversations with more confidence. Frustrations about their bodily differences and the limitations of their bodies were talked about as factors which limited physical spontaneity, impacted on their perceived sexual fulfilment and challenged the development or sustainability of close friendships or intimate partnerships. The young women wanted empathic, sensitive support from knowledgeable health professionals to help them understand their bodies. Conclusion Attachment and a 'sense of being' were the concepts that were closely linked to the young women's development of a secure identity. [ABSTRACT FROM AUTHOR]

Objectives: To examine the role of community groups to support people living with long-term conditions and the organisational factors that influence this role. Methods: Thirty-three semi-structured interviews were conducted with voluntary group organisers purposefully sampled in Greater Manchester from a local database of community groups. Interviews explored the organisations role in supporting people living with a long-term condition, their social networks and the origins of the groups. Results: Respondents' construed their role in supporting individual capacity for management either explicitly (e.g. providing exercise) or implicitly (e.g. emotional support). This role was influenced by a combination of group ideology, funding and social networks. Analysis highlights the role of the non-clinical setting, the social support provided within the group, as well as organisational processes that influenced their capacity to support people living with long-term conditions. Conclusion: By examining the organisation of voluntary groups, this study highlights the way in which they may support or constrain access to an extended range of support for people with longterm conditions. This paper has implications for commissioning of services by the health service from the third sector because of the differing ideological perspectives and limited operationalcapacity. [ABSTRACT FROM AUTHOR]

Background Progressive ataxias are neurological disorders affecting balance, co-ordination of movement and speech. Objective A qualitative study was undertaken to discover patients' experiences of ataxia and its symptoms. Participants Thirty-eight people with ataxia recruited from patient support groups and two hospital outpatients departments. Design Cross-sectional qualitative study with thematic analysis. Results These accounts highlight the limits of medicine in the context of a rare, incurable and disabling disorder, and the embodied uncertainties brought by slowly progressive diseases that lie at the boundaries of mainstream medical knowledge. The existential crises faced by people with ataxia are seemingly magnified by sometimes idiopathic aetiologies and the limited number of inherited conditions identifiable by the available genetic tests. Interviewees were drawn into a medical system that was focused mainly on the diagnosis process, with widely varying results. However, when asked, most had rather valued the provision of disability aids and physical therapies. Only one informant reported overcoming the myriad uncertainties of progressive ataxia, and their account supported the notion of 'biographical repair' in chronic illness. Conclusions Clinical uncertainties in ataxia constrained people's attempts to deal with their condition. The construction of the proactive, informed, medical consumer who is assumed to be a partner in care is problematic in the context of a rare and difficult-to-diagnose disease for which there is usually no cure. Service providers should be mindful of the need to manage patient expectations in relation to diagnosis and cure. More focus might usefully be placed on the provision of physical therapies and disability aids. [ABSTRACT FROM AUTHOR]

The article discusses a study conducted to analyze experiences and perceptions of prognosis and recovery for those with long-term physical conditions without having any mental illness. It is noted that the study analyzed similarities and differences in the experience of chronic physical and mental health conditions in the context of literature from the mental and physical health fields to add to existing literature in the field.

Background: Internet based social media websites represent a growing space for interpersonal interaction. Research has been conducted in relation to the potential role of social media in the support of individuals with physical health conditions. However, limited research exists exploring such utilisation by individuals with experience of mental health problems. It could be proposed that access to wider support networks and knowledge could be beneficial for all users, although this positive interpretation has been challenged. The present study focusses on a specific discussion as a case study to assess the role of the website www.twitter.com as a medium for interpersonal communication by individuals with experience of mental disorder and possible source of feedback to mental health service providers. Method: An electronic search was performed to identify material contributing to an online conversation entitled #dearmentalhealthprofessionals. Output from the search strategy was combined in such a way that repeated material was eliminated and all individual material anonymised. The remaining textual material was reviewed and combined in a thematic analysis to identify common themes of discussion. Results: 515 unique communications were identified relating to the specified conversation. The majority of the material related to four overarching thematic headings: The impact of diagnosis on personal identity and as a facilitator for accessing care; Balance of power between professional and service user; Therapeutic relationship and developing professional communication; and Support provision through medication, crisis planning, service provision and the wider society. Remaining material was identified as being direct expression of thanks, self-referential in its content relating to the on-going conversation or providing a link to external resources and further discussion. Conclusions: The present study demonstrates the utility of online social media as both a discursive space in which individuals with experience of mental disorder may share information and develop understanding, and a medium of feedback to mental health service providers. Further research is required to establish potential individual benefit from the utilisation of such networks, its suitability as a means of service provision feedback and the potential role for, and user acceptability of, mental health service providers operating within the space. [ABSTRACT FROM AUTHOR]

Aim and objectives. The aim of the study was to explore parents' experiences of and the influences, risks and tensions associated with their child's genital ambiguity and the place reconstructive surgeries had in their lives. Background. Research into the clinical management of disorders of sex development is a complex and growing field of study. A small number of studies have indicated that the decisions parents make with regard to their child's care during infancy are confounded by moral, social and emotional factors which can influence their choices. Design. Narrative methods. Methods. In-depth interviews elicited stories from 10 mothers and five fathers of 11 prepubertal children. Results. A key theme from the data focused on the parents' motivations to protect their child from the real or perceived threats arising from other people's attitudes and responses to their ambiguous genitalia. Several rationales for their protective behaviours were described, which encouraged the parents to actively manage their child's care. Conclusion. The dilemmas that parents face in the complex and challenging situation following the birth of a child with ambiguous genitalia require early support from insightful professionals such as nurses. This support could better prepare the parents to recognise and discuss their protective behaviours and the impact these may have on their child's future. Relevance to clinical practice. These findings draw attention to the parents' need for nurses to be knowledgeable about the impact that disorders of sex development can have on family's emotional, psychosocial well-being and decision-making. Nurses' awareness of the debate surrounding genital surgeries is important if they are to understand the motivations that underpin parents' decision-making and how to support them sensitively. Nurses are the health professionals who have the most consistent direct contact with these families throughout the child's life and, therefore, can provide support in the ongoing decision-making process. [ABSTRACT FROM AUTHOR]

Background: A specialist primary care oral surgery service combined with an electronic referral management and triage system was developed in response to concerns raised around overburdened secondary care services in the UK. Whilst the system has the potential to manage conflicting demand for oral surgery services against an objective need, the new pathway represents a number of challenges to existing working practices and could compromise the sustainability of existing hospital services. The aim of this research was to carry out a qualitative exploration of implementation of a new intervention to gain insight into how these challenges have manifested and been addressed.Methods: Views were sought from stakeholders (dentists, hospital staff, commissioners and patients) at various time points over 3 years during and after implementation using semi-structured interviews. Normalization Process Theory informed a qualitative thematic analysis which was carried out using data from interview transcripts to identify important emerging issues.Results: Themes emerging from the data were; amenability to change and assimilation into practice (primary care dentists), compliance and governance, changing perceptions of impact (secondary care staff and commissioners) understanding change in service provision and priorities for treatment (patients). The new pathway impacted stakeholders at different stages of implementation.Conclusion: Electronic referral management with a primary care advanced service for oral surgery was successfully implemented in a specific area of the UK. The service model evaluated has the potential to be expanded across a wider geographical footprint and to support demand management in other specialist services. [ABSTRACT FROM AUTHOR]

The 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. [ABSTRACT FROM AUTHOR]

Context: Uremic pruritus, or itch, is common in people with chronic kidney disease (CKD) and has a negative impact on their lives and well-being. However, for reasons currently unknown, itch often remains unreported and therefore untreated.Objectives: To explore reasons for underreporting of itch to provide pointers for improving itch reporting and management in people with CKD.Methods: We interviewed adult patients with CKD who self-reported experiencing itching in the last three years (n = 25), nephrologists (n = 10), and nurses (n = 12) from three kidney services in the U.K. Topic guides were informed by previous studies and a theoretical model of self-regulation. We conducted a thematic analysis of verbatim transcripts using framework analysis.Results: We identified the following three main themes reflecting factors that may influence whether itch is reported: knowledge on causes and treatment of itch (lack of awareness of the relationship between itch and CKD, and lack of knowledge of treatment options); attitudes toward importance of itch as a health issue (patients' and clinicians' attitudes); and prompts for itch assessment during consultations (routine practice, itch as a marker, and itch severity).Conclusion: Underreporting of itch is related to patients being unaware of its causes, accepting it as something to live with, prioritizing other health issues, and the length and timing of consultations. Health care professionals' assessment and management of itch vary widely and are not necessarily evidence-based. Better patient information, development of clinical practice guidelines, and incorporation of routine symptom assessments into care may improve itch reporting and management in people with CKD. [ABSTRACT FROM AUTHOR]