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Objectives: This paper considers home from the perspective of people living with dementia supporting ongoing discourse around ageing in place and the significance of creating more inclusive communities. Methods: Forty‐six home tour interviews led by people living with dementia were conducted in England and Scotland to better understand the connectivity between home and neighbourhood for people living with dementia. These interviews used a range of participatory and creative approaches including video, photographic images and in situ interviews. Data were analysed via reflexive thematic analysis. Results: Three themes were identified in data analysis. 1. Connected home and neighbourhood, where participants revealed the dynamic relationship between home and neighbourhood; 2. Practices of home, where participants discussed the everyday nature of their homes and routines; and 3. Displaying home and family, which reflected participant's biographical homes in the context of living with dementia. Discussion: The findings show that home holds multiple meanings for people living with dementia. For example, home is understood as a part of the neighbourhood and an extension of the home space into gardens and backyards, thus extending existing discourses that solely focus on the inside of people's homes. For people living with dementia, homes are also sites of negotiation and renegotiation where new meanings are created to reflect the changing nature and context of the home. There is not one fixed solution to these issues. Support and understanding for people living with dementia will need to evolve to adapt to the shifting dynamics and multiple meanings of home. Key points: Neighbourhoods begin within homes and are interconnected. This relationship has important implications for the discourse of ageing in place.'Home' for people living with dementia holds the same meanings for those without dementia, but with some notable differences. It is important to recognise the shifting dynamics of home and to recognise the complexity of home in the context of dementia. There is not a fixed solution to the challenges of ageing at home with dementia, but support and understanding need to evolve alongside people with lived experience.Homes are a site of renegotiation where new meanings are created to reflect the changing nature of home and the lived experience of home for those with dementia.The study has provided findings through innovation in the research design. The employment of creative methods enabled people living with dementia to participate in sharing their own narratives of home.The work provides evidence where there is a current gap in understanding 'what matters' about home for people living with dementia. [ABSTRACT FROM AUTHOR]

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Research which involves disabled children and young people now constitutes a fairly well-established body of work in the social sciences. However, discussion on the role of the (normally adult) researcher has arguably been marginalised in the much-needed exploration of disabled children's 'voices'. Drawing on a qualitative study of the transition to adulthood for young men with Duchenne muscular dystrophy, this paper reflects on the interview 'encounter' between the interviewer, young men and their families. It suggests that we may learn more about the experiences of disabled children and young people if we can find ways of describing the co-production of responses, non-responses and meaning within research interviews. [ABSTRACT FROM AUTHOR]

Children taken into care and custody are arguably the most vulnerable and problematic groups within the wider debate and responses developing to the ‘troubled families’ agenda in England. They represent what the state most wants to avoid when it intervenes in the life of a family. This paper is based on an analysis of the service involvement and needs of the 196 children taken into care or custody over a 3‐year period (2008–2011) in one city local authority in England. The research was undertaken to inform the response to prevention of entry into care and custody which was the original focus of the most intensive part of the troubled families programme in the city. Interviews with 10 senior professionals from a range of agencies involved in setting up this local programme, explored the way the emerging troubled families agenda was shaping ideas about the understanding of and response to the needs of these children and their families. Key findings of the study illustrate the range and complexity of need as well as the sequence and amount of agency involvement. Professionals were often critical of the thinking behind the troubled families agenda, but were positive and creative about new ways of working with these families. [ABSTRACT FROM AUTHOR]

This article highlights three dimensions to understanding children's well-being during and after parental imprisonment which have not been fully explored in current research. A consideration of 'time' reveals the importance of children's past experiences and their anticipated futures. A focus on 'space' highlights the impact of new or altered environmental dynamics. A study of 'agency' illuminates how children cope within structural, material and social confines which intensify vulnerability and dependency. This integrated perspective reveals important differences in individual children's experiences and commonalities in broader systemic and social constraints on prisoners' children. The paper analyses data from a prospective longitudinal study of 35 prisoners' children during and after their (step) father's imprisonment to illustrate the arguments. [ABSTRACT FROM AUTHOR]

ABSTRACT 5 Boroughs Partnership NHS Foundation Trust, in the Northwest of England, has trained over 500 staff in the Knowledge and Understanding Framework, level 1 personality disorder awareness training. This is a 3-day nationally devised training programme delivered via an innovative co-production model (i.e. co-delivery and partnership working with service users who have lived experience). This paper provides quantitative and qualitative information on the effectiveness of training delivery and also serves to provide some insight into the impact of service-user involvement via such a co-production model. Information on 162 participants using the Knowledge and Understanding Framework bespoke questionnaire (Personality Disorder Knowledge, Attitudes and Skills Questionnaire) suggests that the training can be effectively delivered by and within a local NHS Mental Health Trust. Results immediately post-training suggest an improvement in levels of understanding and capability efficacy and a reduction in negative emotional reactions. Indications from a 3-month follow-up suggest that while understanding and emotional reaction remain improved, capability efficacy regresses back to pre-training levels, suggesting the need for ongoing supervision and/or support to consolidate skills. Discussion includes guidelines for the implementation of a truly integrated co-production model of training provision, as well as advice relating to the maximization of long-term benefits. Copyright © 2014 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background: High profile failures of care in the NHS have raised concerns about regulatory systems for health‐care professionals and organizations. In response, the Care Quality Commission (CQC), the regulator of health and social care in England overhauled its regulatory regime. It moved to inspections which made much greater use of expert knowledge, data and views from a range of stakeholders, including service users. Objective: We explore the role of service users and citizens in health and social care regulation, including how CQC involved people in inspecting and rating health and social care providers. Design: We analyse CQC reports and documents, and 61 interviews with CQC staff and representatives of groups of service users and citizens and voluntary sector organizations to explore the place of service user voice in regulatory processes. Results: Care Quality Commission invited comments and facilitated the sharing of existing service user experiences and engaged with representatives of groups of service users and voluntary sector organizations. CQC involved service users in their inspections as "experts by experience." Information from service users informed both the inspection regime and individual inspections, but CQC was less focused on giving feedback to service users who contributed to these activities. Discussion and conclusions: Service users can make an important contribution to regulation by sharing their experiences and having their voices heard, but their involvement was somewhat transactional, and largely on terms set by CQC. There may be scope for CQC to build more enduring relationships with service user groups and to engage them more effectively in the regulatory regime. [ABSTRACT FROM AUTHOR]

Background: Little is known about the lives of parents with intellectual disabilities from minority ethnic communities. Previous research suggests that what it means to live with intellectual disabilities varies across cultural contexts. The current research aimed to explore how cultural values and practices impact upon the experiences of parents with intellectual disabilities within the Bangladeshi community in London, England. Method: Six members of the Bangladeshi community, four Bangladeshi parents with intellectual disabilities and four of their family members were interviewed. Thematic analysis was used to identify key themes. Results: Both parenting and intellectual disability are thought about in this community in ways that make parenting more accessible for people with learning disabilities, but also create tensions to be negotiated. Conclusions: Bangladeshi family carers face dilemmas balancing the benefits and risks of promoting parenting for sons and daughters with intellectual disabilities, particularly in the context of service principles of autonomy and informed consent. [ABSTRACT FROM AUTHOR]

Objectives: Prior research has examined various components involved in the impact of public and internalized stigma on people with mental health problems. However, studies have not previously investigated the subjective experiences of mental health stigma by those affected in a non‐statutory treatment‐seeking population. Design: An in‐depth qualitative study was conducted using thematic analysis to investigate the experiences of stigma in people with mental health problems. Methods: Eligible participants were recruited through a local mental health charity in the North West of England. The topic of stigma was examined using two focus groups of thirteen people with experience of mental health problems and stigma. Results: Two main themes and five subthemes were identified. Participants believed that (1) the ‘hierarchy of labels’ has a profound cyclical impact on several levels of society: people who experience mental health problems, their friends and family, and institutional stigma. Furthermore, participants suggested (2) ways in which they have developed psychological resilience towards mental health stigma. Conclusions: It is essential to utilize the views and experiences gained in this study to aid understanding and, therefore, develop ways to reduce the negative impact of public and internal stigma. Practitioner points: People referred to their mental health diagnosis as a label and associated that label with stigmatizing views. Promote awareness and develop improved strategies (e.g., training) to tackle the cyclical impact of the ‘hierarchy of labels’ on people with mental health problems, their friends and family, and institutional stigma. Ensure the implementation of clinical guidelines in providing peer support to help people to combat feeling stigmatized. Talking about mental health in psychological therapy or health care professional training helped people to take control and develop psychological resilience. [ABSTRACT FROM AUTHOR]

Abstract: Peer supporters are individuals with lived experience and are an integral part of health care systems, providing support to those affected by various phenomena such as homelessness and addictions. However, little is known about the critical elements that underpin peer support interventions. This qualitative study sought to understand the critical elements of intentional peer support with a homeless population, voiced by those who provide and/or receive this support. Twenty‐nine participants from 4 different homeless charities in England were interviewed about their experiences of providing/receiving peer support and what they felt were critical factors to its success. Participants defined peer support as an experience‐based relationship, built upon mutual understanding, empathy, and support. Thematic analysis was utilised to in developing 6 themes. Results identified peers' persistence in developing unique experience‐based relationships, providing social support, role modelling recovery, and peers' motivations were perceived as important factors involved in peer support. It was also found that peers described benefitting from helping, such as, undergoing transformative identity developments that helped them to escape homelessness. Through the retelling of their stories, they create meaning and restructure their autobiography, attributing experiences of homelessness as a catalyst for positive changes in their lives. Limitations and future research are discussed. [ABSTRACT FROM AUTHOR]

Despite considerable quantifiable data about the circumstances of care leavers in the United Kingdom, there is less qualitative data about how these circumstances are experienced. This article is underpinned by positioning theory, with a particular focus on the unfolding personal narratives of young care leavers in relation to their mental health and wellbeing and the role of a life-skills programme in supporting them in this respect. The research illustrates that leaving care projects, such as the one in the current study, are more focused on employment and housing issues than on addressing the mental health and wellbeing needs of young people. Our analysis of interviews with young people illustrates the ambiguity of understandings of concepts such as 'mental health' and 'wellbeing,' and the complexity of responses to questioning around this area. This illustrates one of the major problems in evaluating the outputs and outcomes of such projects in terms of simplistic targets, where mental health and wellbeing are not clearly defined or understood by young people themselves. The current research provides a more complex picture. More research is needed that involves in-depth and longitudinal assessment of specific mental health needs of care leavers and how they can be addressed successfully. [ABSTRACT FROM AUTHOR]

Aim To provide an understanding of the factors that discouraged staff members from using a new web-based platform ( CAMHSweb) with young people in a child and adolescent mental health service ( CAMHS). Although evidence-based service improvement technology like CAMHSweb is becoming more common in child mental health, the staff-level barriers to the use of web-based platforms have not been explored in depth in the literature. Method Semi-structured interviews with six employees were carried out in a London-based child mental health service that a preliminary audit had identified as having a poor utilisation of the platform. All participants had previously been invited to use the platform as part of their clinical work. Results were analysed using thematic analysis (Braun and Clarke, 2006). Findings Three overarching themes covered staff's practical, personal and philosophical barriers to implementation. Interviewees believed that CAMHSweb was too challenging to implement, that it was not an asset to therapists, and that it interfered with the therapeutic process. Discussion and Implications These findings provide a nuanced understanding of the multiple factors that may discourage clinicians from using web-based platforms. This may have implications for researchers or practitioners who aim to design or implement technology in child mental health services. [ABSTRACT FROM AUTHOR]

Overactive bladder (OAB) has been found to have a number of psychological consequences, including anxiety, depression and shame. However, there is little research on how drug treatment, which has been found to be effective at reducing physical symptoms, impacts on these psychological effects. This study aimed to examine patients' experiences of anticholinergic treatment for OAB, and the impact of both OAB and its treatment on psychological well‐being. A cross‐sectional, qualitative interview design with a secondary care outpatient sample was used. The approach was idiographic and sought to understand the detailed complexities and nuances of patient experiences. This small‐scale qualitative study found that, even where there had been symptom reduction, patients did not feel ‘better’, and found it difficult to let go of worries and fears around OAB. These findings suggest that a person with OAB may need support even after a ‘successful’ treatment, as OAB continues to be at the centre of patients' lives. [ABSTRACT FROM AUTHOR]

Background Parents of disabled children often seek support from their peers. The shared experience between parents appears to be a crucial mediating factor. Understanding how a sense of shared experience is fostered can help to design and evaluate services that seek to provide peer support. Methods We carried out a qualitative study involving semi-structured interviews and focus groups. Participants were 12 parents and 23 befrienders who had contact with the Face2 Face one-to-one befriending service in Devon and Cornwall during a 12-month period, and 10 professionals from health, social care and education. Findings Formal structures and processes in place such as training and ongoing supervision and support were highly valued as was the highly personalized, confidential, flexible, one-to-one at-home nature of the service. Crucial to establishing rapport was putting the right people together and ensuring a good match between befrienders and parents. Clearly, the befriending parent has to be emotionally prepared to provide help. However, if the parent being offered support was not ready to accept help at the time it was offered or the type of support was not right for them, they are less likely to engage with the service. Conclusion Organizational and process factors as well as characteristics of the parents offering and receiving support contribute to the sense of shared experience in one-to-one peer support. These factors interact to influence whether peer support is effective and should be explicitly considered when designing and evaluating services. [ABSTRACT FROM AUTHOR]

Background The predominant focus of extant literature exploring maternal experience of developmental disability has been stress, adaptation, efficacy of interventions and the burden of care. Most studies involve mothers of children, with scant attention given to what life is like later. This study qualitatively explores the experience of mothers of young adults (aged 19-28). Materials and methods Semi-structured interviews conducted with six women aged 48-60 were transcribed and analysed using interpretative phenomenological analysis. Results Three themes illustrate how mothers are confronted with their adult children's continuing need for support and how a lack of trust in social care creates anxiety about the future, increasing awareness of mortality. Conclusions Vulnerability represents a useful concept for understanding these findings theoretically. Galvin & Todres' (2013) conceptual framework for the humanization of care provides the opportunity to prioritize the needs of individuals by highlighting dimensions of existence which confer meaning. [ABSTRACT FROM AUTHOR]

Background It is estimated that around 50-90% of people with learning disabilities experience difficulties in communicating. Previous research has linked communication difficulties and self-esteem in other populations, yet this relationship has not previously been investigated for people with Down syndrome. Aims To explore the relationship between communication and self-esteem in adults with Down syndrome. This research also aimed to offer an empowering and inclusive opportunity for adults with learning disabilities to be involved in research. Methods & Procedures Recruitment took place via a charity established for people with Down syndrome. Twelve adults with Down syndrome and an adult they nominated were approached. A qualitative methodology was selected to explore communication and self-esteem. A thematic analysis focused on the qualitative data collected via semi-structured interviews. Outcomes & Results Major themes within the data revealed that a relationship between communication and self-esteem may exist for adults with Down syndrome. Conclusions & Implication This study demonstrated that people with Down syndrome may experience low self-esteem that may be linked to communication. The clinical implications of this are considered and areas for future research are identified. [ABSTRACT FROM AUTHOR]

Objectives Forming part of a process evaluation of a large randomised controlled trial (the Maudsley Outpatient Study of Treatments for Anorexia Nervosa and Related conditions, MOSAIC) comparing two outpatient therapies for Anorexia Nervosa (AN), the Maudsley Model for Treatment of Adults with Anorexia Nervosa (MANTRA) and Specialist Supportive Clinical Management (SSCM), this study adopted a qualitative approach to examine therapist experiences of treatment delivery. Method Twenty MOSAIC therapists completed semi-structured interviews. Interviews were recorded, transcribed and analysed thematically. Results Themes of positive aspects, challenges and therapeutic fit emerged. MANTRA was seen as structured and flexible but could feel demanding on therapist time and skill. The slow pace and narrower focus of SSCM gave patients space to talk, but the lack of psychological tools and nutritional emphasis could create frustration. Views on the therapeutic relationship and patient-therapy fit differed across treatments. Discussion Findings provide testable hypotheses about what works for whom, ideas for therapist training, treatment development and delivery. Copyright © 2014 John Wiley & Sons, Ltd and Eating Disorders Association. [ABSTRACT FROM AUTHOR]

Objectives. Research has found relational qualities of power and intimacy to exist within hearer-voice interactions. The present study aimed to provide a deeper understanding of the interpersonal context of voice hearing by exploring participants' relationships with their voices and other people in their lives. Design. This research was designed in consultation with service users and employed a qualitative, phenomenological, and idiographic design using semi-structured interviews. Method. Ten participants, recruited via mental health services, and who reported hearing voices in the previous week, completed the interviews. These were transcribed verbatim and analysed using interpretative phenomenological analysis. Results. Five themes resulted from the analysis. Theme 1: 'person and voice' demonstrated that participants' voices often reflected the identity, but not always the quality of social acquaintances. Theme 2: 'voices changing and confirming relationship with the self' explored the impact of voice hearing in producing an inferior sense-of-self in comparison to others. Theme 3: 'a battle for control' centred on issues of control and a dilemma of independence within voice relationships. Theme 4: 'friendships facilitating the ability to cope' and theme 5: 'voices creating distance in social relationships' explored experiences of social relationships within the context of voice hearing, and highlighted the impact of social isolation for voice hearers. Conclusions. The study demonstrated the potential role of qualitative research in developing theories of voice hearing. It extended previous research by highlighting the interface between voices and the social world of the hearer, including reciprocal influences of social relationships on voices and coping. Improving voice hearers' sense-of-self may be a key factor in reducing the distress caused by voices. [ABSTRACT FROM AUTHOR]

Many professionals working with individuals with intellectual disability are unconcerned with why someone has the impairment. Genetic aspects may be viewed as, at best irrelevant, but more often, potentially negative. However, where the intellectual disability may be inherited, there are implications for family members and the individual. The data reported here derive from a study of the experiences of families with many boys or men with intellectual disability who were participating in genetic research aimed at finding new causes of intellectual disability. A qualitative design was used, interviewing 120 members of 37 kinships and using framework analysis to explore the data. These family members were positive about participating in the genetic research. They wanted an explanation for what was going on in their family and to enable other family members to have choices about reproduction although the genetic research was unlikely to benefit individuals with intellectual disability. [ABSTRACT FROM AUTHOR]

Medical Education 2011: : 261-272 This study aimed to explore medical students' explanations of their behaviour when instructed to observe or perform intimate examinations or procedures without valid patient consent. We used a qualitative design employing individual and group interviews to elicit narratives of dilemmas associated with professionalism. Qualitative thematic analyses of narratives were followed by a qualitative and quantitative analysis using a validated coding scheme of students' explanations of their behaviours within dilemmas involving intimate examinations carried out without valid consent. Participants ( n = 200) were medical students drawn from each academic year of three medical schools, representing two 5-year undergraduate programmes and one 4-year graduate-entry programme in England, Wales and Australia. Of 833 narratives collected, 112 involved dilemmas associated with intimate examinations. Of these, 63% ( n = 71) described dilemmas which came about because students were instructed to observe or perform intimate examinations or procedures without valid consent. A total of 82% ( n = 58) involved students complying with instructions and contained 349 distinct explanations. Thirteen narratives described cases in which students had refused to comply and contained 84 explanations. A high proportion of explanations of compliance included statements by students that they 'had to' observe or perform the examination or procedure. Explanations of compliance behaviours significantly downplayed the intentionality of actions, whereas explanations of refusal emphasised intentionality (χ = 14.225, d.f. = 2, p = 0.001). Despite clear policies at each school, students in all schools observed or performed intimate examinations or procedures without having gained valid consent from the patient. Faculty development initiatives are clearly essential to help clinical teachers put intimate examination policy into practice. [ABSTRACT FROM AUTHOR]