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Background: Children and young people (CYP) with complex neurodisability experience multiple physical, communication, educational and social challenges, which require complex packages of multidisciplinary care. Part of the holistic care required includes supporting the families and parents/caregivers. The aim of the wider study was to introduce a new programme ('Ubuntu') to parents/caregivers and healthcare professionals (HCPs) in order to test the feasibility and acceptability of the concept and content, with the goal of potential adaptation for the UK in mind. Data collection and analysis uncovered rich data on caregiving journeys, navigation of health services, and perceived service gaps. This paper focuses solely on these topics. Further papers will report on the feasibility and adaptation data. Methods: Two rounds of semi‐structured interviews were conducted with 12 caregivers of CYP with complex neurodisability and six HCPs from a variety of disciplines, recruited from a community child health service in London Borough of Newham, UK in 2020. The interviews included open‐ended questions to explore caregiving journeys, experiences of navigating health services and perceived service gaps. Transcripts were analysed using a data‐driven inductive thematic analysis. Results: Three themes were identified that related to the aim of understanding caregivers' experiences and unmet needs relating to current service provision. These were (1) Caregiver Mental Health, (2) The Information Gap and (3) The Need for Holistic Support. Mental health difficulties were reported, particularly around the period of diagnosis. Priority needs included the provision of clear information about the diagnosis and services offered, opportunities to forge peer support networks and for services across the community to collaborate. Conclusions: The delivery of health services for CYP with neurodisability should encompass the broad needs of the family as well as meeting the clinical needs of the CYP. [ABSTRACT FROM AUTHOR]

Infants, children and young people with life-limiting or life-threatening conditions often experience acute, transient pain episodes known as breakthrough pain. There is currently no established way to assess breakthrough pain in paediatric palliative care. Anecdotal evidence suggests that it is frequently underdiagnosed and undertreated, resulting in reduced quality of life. The development of a standardised paediatric breakthrough pain assessment, based on healthcare professionals' insights, could improve patient outcomes. This study aimed to explore how healthcare professionals define and assess breakthrough pain in paediatric palliative care and their attitudes towards a validated paediatric breakthrough pain assessment. This was a descriptive qualitative interview study. Semi-structured interviews were conducted with 29 healthcare professionals working in paediatric palliative care across the UK. An inductive thematic analysis was conducted on the data. Five themes were generated: 'the elusive nature of breakthrough pain', 'breakthrough pain assessment', 'positive attitudes towards', 'reservations towards' and 'features to include in' a paediatric breakthrough pain assessment. The definition and assessment of breakthrough pain is inconsistent in paediatric palliative care. There is a clear need for a validated assessment questionnaire to improve assessment, diagnosis and management of breakthrough pain followed by increased healthcare professional education on the concept. [ABSTRACT FROM AUTHOR]

Background: Cognitive impairment is common in Parkinson's disease and is associated with poorer quality of life and increased caregiver distress, but little qualitative information is available on lived experiences of people with Parkinson's who also have cognitive impairment. Objectives: The aim of this study was to explore the challenges of cognitive impairment in Parkinson's, triangulating the perspectives of people with Parkinson's, caregivers and healthcare professionals. Methods: Semistructured interviews were conducted with 11 people with Parkinson's and cognitive impairment, 10 family caregivers and 27 healthcare professionals, using purposive sampling in the United Kingdom (2019–2021). Cognitive impairment was identified by healthcare professionals and required subjective symptoms. Relevant cognitive diagnoses were recorded. Interviews were audio‐recorded, transcribed and analysed using reflexive thematic analysis. Results: An overarching concept of the compound impact of cognitive and physical decline was developed, with six themes. Four themes describe the experience of living with cognitive impairment in Parkinson's: (1) Challenges in Daily Activities, (2) Psychological Impact and (3) Evolving Communication Difficulties together contributing to (4) Social Shift, encompassing a reduction in wider social activities but intensification of close relationships with increased dependence. A fifth theme (5) Living Well describes positive influences on these experiences, encompassing intrinsic motivation, self‐management strategies and supportive relationships. Furthermore, underlying and shaping the whole experience was the sixth theme: (6) Preconceptions about Cognitive Impairment, describing fear and denial of symptoms and poor understanding of the nature of cognitive impairment in Parkinson's, with differences to other dementia pathologies. Conclusions: Cognitive impairment superimposed on the existing challenges of Parkinson's has a multifaceted impact and makes living with the condition arduous. Increased understanding of the experiences of this group and employing the identified facilitators for living well may be able to improve patient and caregiver experiences. Patient or Public Contribution: Two people with Parkinson's and cognitive impairment and three caregivers contributed to the study. Between them they contributed throughout the entirety of the project, giving input at conceptualisation as well as advice and review of interview questions, participant information leaflets, recruitment, interpretation of findings and summaries of the project. [ABSTRACT FROM AUTHOR]

Background: Healthcare usage patterns change for people with life limiting illness as death approaches, with increasing use of out-of-hours services. How best to provide care out of hours is unclear. Aim: To evaluate the effectiveness and effect of enhancements to 7-day specialist palliative care services, and to explore a range of perspectives on these enhanced services. Design: An exploratory longitudinal mixed-methods convergent design. This incorporated a quasi-experimental uncontrolled pre-post study using routine data, followed by semi-structured interviews with patients, family carers and health care professionals. Setting/participants: Data were collected within specialist palliative care services across two UK localities between 2018 and 2020. Routine data from 5601 unique individuals were analysed, with post-intervention interview data from patients (n = 19), family carers (n = 23) and health care professionals (n = 33; n = 33 time 1, n = 20 time 2). Results: The mean age of people receiving care was 73 years, predominantly white (90%) and with cancer (42%). There were trends for those in the intervention (enhanced care) period to stay in hospital 0.16 days fewer, but be hospitalised 2.67 more times. Females stayed almost 3.5 more days in the hospital, but were admitted 2.48 fewer times. People with cancer had shorter hospitalisations (4 days fewer), and had two fewer admission episodes. Themes from the qualitative data included responsiveness (of the service); reassurance; relationships; reciprocity (between patients, family carers and staff) and retention (of service staff). Conclusions: Enhanced seven-day services provide high quality integrated palliative care, with positive experiences for patients, carers and staff. [ABSTRACT FROM AUTHOR]

Purpose: This study aims to explore how young people in child and adolescent mental health services (CAMHS) in the UK, Ireland, The Netherlands and Croatia, experienced leaving CAMHS and identified a range of factors impeding optimal discharge or transition to adult mental health services (AMHS). Design/methodology/approach: Interviews about discharge or transition planning, including what information was provided about their ongoing mental health needs, undertaken with 34 young people aged 17–24, all previous or current attendees of CAMHS. Some interviews included accounts by parents or carers. Data were thematically analysed. Findings: A number of previously well-documented barriers to a well-delivered discharge or transition were noted. Two issues less frequently reported on were identified and further discussed; they are the provision of an adequately explained, timely and appropriately used diagnosis and post-CAMHS medication management. Overall, planning processes for discharging or transitioning young people from CAMHS are often sub-optimal. Practice with regard to how and when young people are given a diagnosis and arrangements for the continuation of prescribed medication appear to be areas requiring improvement. Originality/value: Study participants came from a large cohort involving a wide range of different services and health systems in the first pan-European study exploring the CAMHS to adult service interface. Two novel and infrequently discussed issues in the literature about young people's mental health transitions, diagnosis and medication management were identified in this cohort and worthy of further study. [ABSTRACT FROM AUTHOR]

Purpose: Deaf people, who are British Sign Language (BSL) users, are, at times, carers for their parent or spouse when they have dementia. This can be a challenging role for the wider population, but if the common language in service provision is not one you share, then this care can be impacted by the lack of formal structures that support the Deaf caring role. This study aims to explore the experiences of Deaf carers supporting people with dementia, in an unpaid role, during the COVID-19 pandemic to understand more about their potential support preferences. Design/methodology/approach: Online interviews with seven Deaf carers sharing their experiences of supporting their family member with dementia happened during the first year of the COVID-19 pandemic. Interpretive phenomenological analysis was used to qualitatively examine each Deaf carers' stories. Findings: Findings included Deaf carers' lack of access to information, surrendering their autonomy to hearing family members to communicate with health-care professionals, with overarching isolation within local communities and online. Findings show a widespread infrastructural failure to meet the linguistic and specific support needs of this minority population. Research limitations/implications: Seven Deaf carers took part in this study. This means the findings may not be generalisable. Practical implications: Health-care professionals and social care structures need to develop robust clear communication pathways for Deaf carers to receive the support needed to provide effective care. Social implications: If health-care professionals undertake training about Deaf people and BSL, that will mean Deaf carers will receive effective support to be able to care for a person living with dementia. This means that their Deaf identity will be recognised within the mainstream and the care provided will be much more effective for the person with dementia. Originality/value: To the best of the authors' knowledge, these are the first interviews undertaken with Deaf carers of people with dementia during the COVID-19 pandemic and its subsequent lockdowns. Understanding everyday barriers and social care limitations in terms of language access will enable Deaf carers to assert their rights and for care professionals to adapt their communication to match the individuals involved in the care package. [ABSTRACT FROM AUTHOR]

Emotionally Unstable Personality Disorder (EUPD) is a complex and often stigmatising diagnosis. Although falling under the remit of mental health services, it is not always seen as a mental health need, and research suggests that if parents or carers are not provided with more holistic support, parental mental health will deteriorate with children likely to have poorer outcomes, placing them at an increased risk of harm. This likelihood of harm increases with compounding factors such as substance misuse and domestic abuse. One organisation alone cannot effectively address the complex difficulties that people with this diagnosis may experience, thus inter-agency working is necessary. This article explores the barriers and facilitators to inter-agency working to support parental care-givers with a diagnosis of EUPD between Children's Social Care and a Community Mental Health Team within the same English area. Five mental health care coordinators and two children and families' social workers who had experience working with this client group were interviewed. Participants identified the challenges and benefits of working with their partner agency around communication, knowledge, stigmatisation and resources. The research provides suggestions to develop current inter-agency working relationships and to enhance care and support available to people experiencing the diagnosis. [ABSTRACT FROM AUTHOR]

Background: Despite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tended to focus on the religious aspects among children with cancer. Aim: To identify the spiritual needs of children with life-limiting and life-threatening conditions. Design: Cross-sectional semi-structured, qualitative interview study with children, families and health and social care professionals. Verbatim transcripts were analysed using Framework analysis Setting/participants: Purposively sampled children with life-limiting and life-threatening conditions, their parents and siblings, health and social care professionals recruited from six hospitals and three children's hospices in the UK, and commissioners of paediatric palliative care services recruited through networks and a national charity. Results: One hundred six participants were interviewed: 26 children (5–17 years), 53 family members (parents/carers of children 0–17 years and siblings (5–17 years)), 27 professionals (health and social care professionals and commissioners of paediatric palliative care). Themes included: living life to the fullest, meaning of life and leaving a legacy, uncertainty about the future, determination to survive, accepting or fighting the future and role of religion. Children as young as 5 years old identified needs or concerns in the spiritual domain of care. Conclusions: Addressing spiritual concerns is essential to providing child- and family-centred palliative care. Eliciting spiritual concerns may enable health and social care professionals to identify the things that can support and enhance a meaningful life and legacy for children and their families. [ABSTRACT FROM AUTHOR]

Background: The COVID‐19 pandemic triggered rapid and unprecedented changes in the use of digital technologies to support people's social inclusion. We examined whether and how co‐resident and non‐co‐resident family carers of people with dementia engaged with digital technologies during this period. Methods: Throughout November 2020‐February 2021, we interviewed 42 family carers of people with dementia from our DETERMIND‐C19 cohort. Preliminary analysis was conducted through Framework analysis, followed by an inductive thematic analysis. Findings: Digital technologies served as a Facilitator for social inclusion by enabling carers to counter the effects of the differing restrictions imposed on them so they could remain socially connected and form a sense of solidarity, access resources and information, engage in social and cultural activities and providesupportand independence in their caring role. However, these experiences were not universal as carers discussed some Challenges for tech inclusion, which included preferences for face‐to‐face contact, lack of technological literacy and issues associated with the accessibility of the technology. Conclusion: Many of the carers engaged with Information and Communication Technologies, and to a lesser extent Assistive Technologies, during the pandemic. Whilst carers experienced different challenges due to where they lived, broadly the use of these devices helped them realise important facets of social inclusion as well as facilitated the support they provided to the person with dementia. However, to reduce the 'digital divide' and support the social inclusion of all dementia carers, our findings suggest it is essential that services are attuned to their preferences, needs and technological abilities. Key Points: Many co‐resident and non‐co‐resident carers used Information and Communication Technology and Assistive Technology during the pandemic.The digital technology supported them to retain their social inclusion and manage the care of the person with dementia.Carers faced different challenges when using the digital technology depending on where they lived and on the severity of the person's dementia that they were supporting.Formal services must be attuned to the preferences, needs and technological abilities of carers of people with dementia if they are to address the 'digital divide' and support their social inclusion. [ABSTRACT FROM AUTHOR]

Background: The number of children with a life-limiting condition is increasing. The mothers of these children commonly provide extensive care at home for their child and are at a higher risk of poor health than other mothers. The impact of this is rarely explored from mothers' perspectives. Aim: To explore mothers' accounts of their physical and mental health, experiences of accessing healthcare and who they think should support their health. Design: Qualitative semi-structured interviews were conducted and analysed using thematic analysis. Setting/participants: Thirty mothers of children with a life-limiting condition were recruited via three UK children's hospices and social media. Results: Mothers felt that their health concerns could be misunderstood by professionals, describing untimely and inappropriate support that failed to recognise the nature of caring for a child with a life-limiting condition. This led to mothers' reluctance in addressing these concerns. Mothers felt unable to prioritise their own needs, relative to those of their child and worried about who would look after their child if they did become unwell. They described stress as a result of battles with services rather than as a result of caregiving. Mothers valued feeling recognised as caregivers, which made it easier to look after their health alongside their child's. Hospice support was particularly valuable in this respect. Conclusions: A more unified system that recognises not only the unique set of challenges presented to mothers caring for a child with a life-limiting condition, but the value of palliative care services in supporting these mothers, is required. [ABSTRACT FROM AUTHOR]

Purpose: To report the experiences of End of Life (EoL) care in UK care homes during the COVID-19 pandemic. Methods: UK care home staff and family carers of residents in care home took part in remote, semi-structured interviews from October to November 2020, with 20 participants followed-up in March 2021. Interviews were conducted via telephone or online platforms and qualitatively analysed using inductive thematic analysis. Results: Forty-two participants (26 family carers and 16 care home staff) were included in a wider qualitative study exploring the impact on dementia care homes during the pandemic. Of these, 11 family carers and 9 care home staff participated in a follow-up interview. Following descriptive thematic analysis, three central themes concerning EoL care during the pandemic specifically, were conceptualised and redefined through research team discussions: 1) Wasting or losing time; 2) Maintaining control, plans and routine; and 3) Coping with loss and lack of support. Lack of suitable, meaningful visits with people with dementia in care homes resulted in negative feelings of guilt and abandonment with both family carers and care home staff. Where families experienced positive EoL visits, these appeared to breach public health restrictions at that time. Conclusion: It is recommended that care homes receive clear guidance from the government offering equitable contact with relatives at EoL to all family members, to support their grieving and avoid subsequent negative impacts to emotional wellbeing. [ABSTRACT FROM AUTHOR]

This paper examines the provision of primary care for young people with an eating disorder within the UK from the perspectives of three key stakeholder groups: young people with an eating disorder, carers of young people with an eating disorder and General Practitioners (GPs). Twenty‐two young people with an eating disorder (aged 16–25) and 10 carers completed qualitative questionnaires or participated in interviews about their experiences of seeking primary care from GPs. Forty‐one GPs participated in either focus groups or interviews about delivering care to young people with eating disorders. Interviews and focus groups were audio‐recorded and transcribed verbatim. All data were then analysed qualitatively using thematic analysis. Our analysis indicates that GPs often felt they lacked the necessary knowledge and/or resources to provide adequate support to young people with an eating disorder who they also often viewed as a "difficult" patient group. Young people and carers expressed mixed but predominantly negative experiences; reporting that GPs often lacked adequate understanding of eating disorder, failed to take participants' concerns seriously, and delayed referring patients to specialist services. Our findings indicate a need for interventions that will improve primary care provision and access to appropriate support for young people with an eating disorder. [ABSTRACT FROM AUTHOR]

Objective: This study aimed to explore patients' experiences of their involvement in the design and delivery of interprofessional education interventions focussing on mental ill‐health for students studying in undergraduate healthcare and healthcare‐related programmes. Design: A qualitative methodology using a Grounded Theory approach was used to undertake an iterative series of focus groups with members of a university's Patient, Carer and Public Involvement (PCPI) Group who have a history of mental ill‐health and were involved in the development and delivery of educational interventions for students on undergraduate healthcare and healthcare‐related programmes. Their experiences of being involved in teaching and learning activities, collaboration with academic staff and integration into the academic faculty were explored. Constant comparative analysis facilitated the identification and prioritisation of salient themes. Results: Five salient inter‐related themes emerged from the data: (1) reduced stigma and normalisation of experience of illness; (2) enhanced self‐worth; (3) improved well‐being; (4) community and connection; and (5) enduring benefits. Conclusions: A supportive university community and a designated academic PCPI co‐ordinator facilitate a supportive environment for patients and carers to develop as educators, contribute to the training of future healthcare professionals and improve their own personal well‐being. Appropriately resourced and well‐supported initiatives to integrate patients, carers and the public into the functions of an academic faculty can result in tangible benefits to individuals and facilitate meaningful and enduring connections between the university and the wider community within which it is situated. Patient and Public Involvement: Patients have been involved in the design of the teaching and learning initiatives that this study was primarily focused on. Patients were given autonomy in determining how their experiences should be incorporated into teaching and learning experiences. [ABSTRACT FROM AUTHOR]

Context: Being involved in one's care is prioritised within UK healthcare policy to improve care quality and safety. However, research suggests that many older people struggle with this. Design: We present focused ethnographic research exploring older peoples' involvement in healthcare from hospital to home. Results: We propose that being involved in care is a dynamic form of labour, which we call 'involvement work' (IW). In hospital, many patients 'entrust' IW to others; indeed, when desired, maintaining control, or being actively involved, was challenging. Patient and professionals' expectations, alongside hospital processes, promoted delegation; staff frequently did IW on patients' behalf. Many people wanted to resume IW postdischarge, but struggled because they were out of practice. Discussion: Preference and capacity for involvement was dynamic, fluctuating over time, according to context and resource accessibility. The challenges of resuming IW were frequently underestimated by patients and care providers, increasing dependence on others post‐discharge and negatively affecting peoples' sense and experience of (in)dependence. Conclusions: A balance needs to be struck between respecting peoples' desire/capacity for non‐involvement in hospital while recognising that 'delegating' IW can be detrimental. Increasing involvement will require patient and staff roles to be reframed, though this must be done acknowledging the limits of patient desire, capability,and resources. Hospital work should be (re)organised to maximise involvement where possible and desired. Patient/Public Contribution: Our Patient and Public Involvement and Engagement Panel contributed to research design, especially developing interview guides and patient‐facing documentation. Patients were key participants within the study; it is their experiences represented. [ABSTRACT FROM AUTHOR]

Background: Duchenne muscular dystrophy is a rare genetic neuromuscular disorder, which can result in early death due to disease progression. Ataluren is indicated for the treatment of nonsense mutation Duchenne muscular dystrophy, in ambulatory individuals aged two years and older. This study explored the symptoms and impacts of nonsense mutation Duchenne muscular dystrophy and experience with ataluren. Methods: Qualitative interviews were conducted with caregivers in the UK. Interviews were conducted by telephone, were recorded and transcribed. Data were analysed using thematic analysis and saturation was recorded. Results: Ten interviews were conducted with parents of individuals aged 4–19 years. Key symptoms included muscle weakness and muscle breakdown, which were associated with limitations in physical function and pain. These impacted individuals' daily activities, social activities and emotional wellbeing. These concepts and relationships were illustrated in a conceptual model, along with positive and negative moderating factors. Experience with ataluren and changes since initiation with treatment were discussed. Conclusion: Individuals with nonsense mutation Duchenne muscular dystrophy experience a range of interrelated symptoms and functional issues which impact their broader health-related quality of life. Treatments which address this high unmet need have the potential to improve the health-related quality of life of these individuals. [ABSTRACT FROM AUTHOR]

Background: Duchenne muscular dystrophy is a rare genetic neuromuscular disorder, which can result in early death due to disease progression. Ataluren is indicated for the treatment of nonsense mutation Duchenne muscular dystrophy, in ambulatory individuals aged two years and older. This study explored the impact of caring for an ambulatory individual with nonsense mutation Duchenne muscular dystrophy, as well as the impact of treatment with ataluren on the caregiver experience, using retrospective recall. Methods: Qualitative interviews were conducted with caregivers in the UK. Interviews were conducted by telephone, were recorded and transcribed. Data were analysed using thematic analysis and saturation was recorded. Results: Ten interviews were conducted with parents of individuals aged 4–19 years. Caregivers reported proximal impacts (physical, emotional, time-related), and distal impacts (work, relationships, social life) of caring for their sons. The relationships between these impacts were illustrated in a conceptual model. Changes to the caregiver experience since initiation with their son's treatment were discussed. Conclusion: Caring for an ambulatory individual with nonsense mutation Duchenne muscular dystrophy has a substantial multifaceted impact on caregivers. Treatments which have the potential to improve symptoms or delay progression, may also have a positive impact on the quality of life of caregivers. [ABSTRACT FROM AUTHOR]

Introduction: The clinical benefits of 24-hour postural management are widely recognised by occupational therapists, but little is known about its impact on service users and carers or whether clinical practice is consistent across regions. The aim of this research was to investigate the use of 24-hour postural management by occupational therapists and to explore its impact on service users with neurodisability and their carers. Methods: Quantitative and qualitative methods were employed in two phases: (a) online survey with 96 occupational therapists across one UK region, with data analysed by descriptive statistics and correlations; (b) focus groups with service users and/or carers (n = 9), with data analysed by thematic analysis. Results: Findings showed moderate positive correlation between frequency of use and (a) all key intervention skills and (b) knowledge of night-time positioning (p < 0.001). Moderate positive correlations were found between level of training and (a) assessment skills and (b) knowledge of night-time positioning (p < 0.001). The overarching theme from focus groups was 'reliance on individualised equipment', with overwhelming frustration from lack of support, loss of identity, equipment cost, insufficient focus on preventative strategies and accessibility issues. Conclusion: A clinical practice guideline, including training, is crucial to direct practice. Providers must engage with service users and carers to address their frustrations. [ABSTRACT FROM AUTHOR]

Background: Increasing numbers of children with complex health‐care needs are cared for at home by their family. The aim of this qualitative study was to explore the challenges experienced by families caring for children who need complex medical care at home. Methods: We conducted a thematic analysis of eleven in‐depth interviews with parents who carry out specialist medical procedures (eg, enteral feeding, bowel washouts and tracheostomy care) for their children at home. Participants were purposely selected from an existing sample of interviews with parents whose child had abdominal surgery in the first year of life. Results: We identified three overarching themes: (a) responsibilities of the parent, (b) impact on daily life and (c) the parent journey over time. Parents have substantial responsibilities, including performing medical procedures, managing emergencies (sometimes life‐threatening), co‐ordinating care and advocating for their child. Their responsibilities have an enormous impact on the family: going out of the home becomes a challenge, there are constant constraints on time, parents are sleep‐deprived and there are wider impacts on siblings. The third theme explores the parent journey over time as parents become experts and make sense of the new normal. Discussion: The burden of care on families caring for children with complex medical needs is much greater than is generally understood by either multidisciplinary health‐care teams or the general public. Families need to be better prepared and supported for the responsibilities they take on and the burden of care needs to be shared by others. [ABSTRACT FROM AUTHOR]

Background: Service user and carer perspectives on safety issues in mental health services are not well known and may be important in preventing and reducing harm. The development of the Yorkshire Contributory Factors Framework—Mental Health (YCFF‐MH) provides a broad structure within which to explore these perspectives. Objective: To explore what service users of mental health services and their carers consider to be safety issues. Design, setting and participants: Qualitative interviews with 13 service users and 7 carers in the UK. Participants were asked about their experiences and perceptions of safety within mental health services. Perceived safety issues were identified using framework analysis, guided by the YCFF‐MH. Results: Service users and carers identified a broad range of safety issues. These were categorized under 'safety culture' and included psychological concepts of safety and raising concerns; 'social environment' involved threatened violence and sexual abuse; 'individual service user and staff factors' dominated by not being listened to; 'management of staff and staffing levels' resulting in poor continuity of care; and 'service process' typified by difficulty accessing services during a crisis. Several examples of 'active failures' were also described. Discussion and conclusions: Safety issues appear broader than those recorded and reported by health services and inspectorates. Many safety issues have also been identified in other care settings supporting the notion that there are overlaps between service users and carers' perspectives of safety in mental health services and those of users in other settings. Areas for further research are suggested. [ABSTRACT FROM AUTHOR]

• UK law changed in 2018 to permit cannabis prescribing. Cannabis remains otherwise criminalised. Participants experienced benefits from cannabis across a broad range of conditions. • Most people who need a cannabis prescription in the UK still cannot access one. • Poor implementation of cannabis prescribing policy creates heath inequalities. • Intractable prohibition policy context continues to create social harms. This paper reports on the first qualitative study to interview people prescribed cannabis in the UK. Cannabis is a class B controlled substance under the 1971 Misuse of Drugs (MoD) Act, but a 2018 change to UK regulations provided for the prescription of cannabis for medical purposes. Relatively few people have been able to access a prescription, despite this policy change. This paper examines their experiences. Qualitative, semi-structured interviews were conducted with 24 people with a prescription for cannabis, or their carers. Data was analysed using a reflextive thematic analysis approach. The findings are discussed using a zemiology (social harms) perspective which provides a language for critical reflection on the current cannabis policy context. All participants reported that cannabis had significantly improved their mental and/or physical health, across a broad range of conditions. Many had been able to reduce their use of conventional medicines and reported that cannabis had relatively few side effects. Despite the potentially life-enhancing benefits of cannabis medicine, patients in the UK face multiple barriers to access. These include a lack of funding streams, bureaucratic supply problems, and a lack of training for doctors and police. Even for the few people able to obtain a prescription, the ongoing criminalisation of cannabis in the UK contributed to their experiences of stigmatisation. This often made it difficult and anxiety-inducing to take their medicine in public spaces. The UK government's lack of implementation of medical cannabis legalisation, combined with their ongoing prohibition position, is producing multiple harms to people who need cannabis medicine. The policy context is perpetuating stigmatising attitudes to cannabis which, as we demonstrate, contribute to social harms. We make recommendations on equality of patient access, and highlight the importance of education and policy change as means of combatting stigma. [ABSTRACT FROM AUTHOR]

Background: Clinicians face considerable challenges in identifying patients with advanced heart failure who experience significant symptom burden at the end of life. Often, these patients are cared for in the community by a loved one who has limited access to support from specialist services, including palliative care. Aim: The aims of this study were to explore caregivers' experience when caring for a loved one with advanced heart failure at the end of life and to identify any unmet psychosocial needs. Methods: This article reports findings of a qualitative study, using semistructured, one-to-one interviews with current and bereaved caregivers, who participated in a larger mixed-methods study. Interviews were conducted by a trained researcher, digitally recorded, transcribed verbatim, and imported to NVivo 11 for data management and coding. Data were analyzed using thematic analysis and an inductive approach. Results: The 30 interviews included 20 current caregivers and 10 bereaved caregivers. The central feature of the caregivers' experience was identified as being "a physical and emotional rollercoaster." There were 3 main themes identified: poor communication, living with uncertainty, and lack of service provision. These themes were supported by 6 subthemes: inadequate understanding of palliative care, a 24/7 physical burden, emotional burden, inability to plan, no care continuity, and dying lonely and unsupported. Conclusions: Caregivers in advanced heart failure need clearer communication regarding diagnosis and prognosis of their loved one's condition to help with the uncertainty of their situation. Improved identification of palliative care needs and more coordinated service provision are urgently required to address their physical and emotional challenges from diagnosis through bereavement. [ABSTRACT FROM AUTHOR]

Introduction Health policy promotes living well with dementia. Occupational therapists deliver interventions to support people with dementia and family carers to live well. This study aimed at identifying influences on uptake of a community occupational therapy intervention by people with dementia and carers, as little evidence about this topic exists. Method Seventeen semi-structured, paired interviews with people with dementia and carers were conducted as part of the 'Valuing Active Life in Dementia' research programme. A secondary, qualitative analysis of these interviews explored influences on uptake of the intervention. Findings Four main themes were identified: 'Grabbing at straws and keen to take part'; 'We're trying to put a routine in'; 'We didn't know what to expect', and 'Give it a go'. Factors identified as potentially influencing uptake included whether the intervention was perceived as potentially meeting needs for support and activity, and whether participants were struggling to adjust or cope. Conclusion Despite limited expectations or apprehension, uptake of this intervention was demonstrated. Understanding why people with dementia and carers accept intervention offers can inform what occupational therapists provide and how it is offered. Further research is required to determine the occupational therapy interventions people with dementia and carers might find supportive at different stages of the disease trajectory. [ABSTRACT FROM AUTHOR]

Objective: Recessive dystrophic epidermolysis bullosa (RDEB) is a rare genetic skin disorder which requires intensive hand therapy to delay fusion of the digits. Existing dressings do not conform to the complex structure of the hand and are applied in patches held with additional bandages, leading to an occlusive environment. The aim was to co-design with patients a dressing glove based on their user experiences and needs. Method: Qualitative interviews and focus groups with children and adults with RDEB, and their carers, were conducted. Iterative feedback of design cues, bench and surrogate testing of materials and prototype refinement were achieved through collaborative codesign with patients, carers, clinicians and manufacturers. Results: Thematic analysis generated eight user needs and corresponding design cues, addressing issues of absorbency, adherence, comfort, adaptability, ease of application and removal, breathability, protection, and hand hygiene. A prototype was selected for proof of concept testing. Conclusion: This novel dressing glove design met the patient's requirements for a dressing, which conformed to the hand structure and sat in the web spaces to keep fingers separated. Proof of concept testing has since been undertaken with patients to determine performance, value for money and whether further developments are required. [ABSTRACT FROM AUTHOR]

Communication has featured prominently in person-centred dementia care research, but no consensus has been reached on which communication techniques are most helpful in supporting person-centred care. This qualitative study explored communication techniques used by domiciliary and community care workers of people with dementia in the UK. Care workers trained in the SPECAL® method (Specialised Early Care for Alzheimer’s) were invited to semi-structured interviews. The data were analysed using a constructivist grounded theory approach. Themes from the data were discussed as a potential basis for developing a substantive theory. The care workers contributed to client well-being through modifying their communication techniques, expressing a protective, empathetic and reassuring approach, underpinned by reflection. Clients exhibited greater well-being and less anxious behaviour. The care workers’ use of SPECAL® communication methods, supported by supervision, may provide a unique combination of techniques, contributing to the development of caring relationships, to care worker and client well-being, and to the maintenance of client personhood. [ABSTRACT FROM AUTHOR]

Aims: This study explored the feasibility of using Construal Level Theory to analyse proxy decision maker thinking about a hypothetical ethical dilemma, relating to a person who has dementia. Background: Proxy decision makers make decisions on behalf of individuals who are living with dementia when dementia affects that individual's decision making ability. Ethical dilemmas arise because there is a need to balance the individual's past and contemporary values and views. Understanding of how proxy decision makers respond is incomplete. Construal Level Theory contends that individuals imagine reactions and make predications about the future by crossing psychological distance. This involves abstract thinking, giving meaning to decisions. There is no empirical evidence of Construal Level Theory being used to analyse proxy decision maker thinking. Exploring the feasibility of using Construal Level Theory to understand dementia carer thinking regarding proxy decisions may provide insights which inform the support given. Design: Descriptive qualitative research with semi-structured interviews. Methods: Seven participants were interviewed using a hypothetical dementia care scenario in February 2016. Interview transcripts were analysed for themes. Construal Level Theory was applied to analyse participant responses within themes using the Linguistic Category Model. Results: Participants travelled across psychological distance, using abstract thinking to clarify goals and provide a basis for decisions. When thinking concretely participants established boundaries regarding the ethical dilemma. Conclusion: Construal Level Theory gives insight into proxy decision maker thinking and the levels of abstraction used. Understanding what dementia carers think about when making proxy decisions may help nurses to understand their perspectives and to provide appropriate support. [ABSTRACT FROM AUTHOR]

Aim: To explore the experience and the preparedness of family carers in their caregiving role as best interest decision-makers of a relative living with advanced dementia. Background: The prevalence of dementia is a global issue. The role of being a carer of a relative living with dementia does not necessarily lessen once they are admitted to a nursing home. Best interest decision-making including end-of-life care decisions need to be made and reaching these choices can be challenging. The preparedness of family carers in this role needs greater understanding. Design: Descriptive qualitative study. Methods: During 2015 twenty semi-structured interviews were conducted of family carers of nursing home residents living with advanced dementia, then analysed using Braun and Clarke's thematic analysis. Results: Three themes were identified: (1) Caring for someone living with dementia. The impact on the carer's holistic well-being and their experience of being a best interest decision-maker; (2) Accessing support. The influential nature of formal and informal networks; (3) Perceived knowledge and understanding of the dementia trajectory of carers and nursing staff. Conclusion: The experiences and preparedness of informal carers is a reflection of their personal response, but the distress experienced highlights the significant need of adequate support availability and of enhancing nursing staffs' dementia expertise to maximize their role in facilitating best interest decision-making. This has significant implications for nursing practice and for service user and nursing staff education. Considering the global impact of dementia, our findings have international relevance to similar nursing homes across the world. [ABSTRACT FROM AUTHOR]

Innovative methods to manage frailty are critical to managing the needs of an ageing population. Evidence suggests there are opportunities to reverse or prevent frailty through early intervention. However, little is known about older adults’, families’ and practitioners’ beliefs about the malleability of frailty. This study examined European stakeholders’ accounts of the acceptability and feasibility of frailty screening and prevention to inform future intervention development. Semi-structured focus groups and individual interviews were conducted in three European Union countries (Italy, Poland and the United Kingdom) with key stakeholders – frail and non-frail older adults, family care-givers, and health and social care professionals. Thematic analysis identified four themes: synchronicity between the physical and the psychological in frailty, living with frailty in the social world, the need for a new kind of care, and screening for and preventing frailty. Findings emphasised the need for a holistic approach to frailty care and early intervention. Integrated care services and advocacy were important in the organisation of care. Central to all stakeholders was the significance of the psychological and social alongside the physical elements of frailty and frailty prevention. Support and care for older adults and their family care-givers needs to be accessible and co-ordinated. Interventions to prevent frailty must encompass a social dimension to help older adults maintain a sense of self while building physical and psychological resilience. [ABSTRACT FROM AUTHOR]

Background: While studies have evaluated caregiver outcomes in heart failure, the burden and support needs when caring for someone with advanced heart failure at the end of life have yet to be outlined. Aim: To identify psychosocial factors associated with caregiver burden and evaluate the support needs of caregivers in advanced heart failure. Design: A sequential mixed methods study comprising two phases: (1) postal survey with advanced heart failure patients and their caregivers and (2) interviews with current and bereaved caregivers. Correlation, chi-square, t test, regression and thematic analysis were undertaken on the data. Participants: Advanced heart failure patients (n = 112) and their caregivers (n = 84) were recruited from secondary care settings across the United Kingdom and Ireland. For phase 2 interviews, current caregivers (n = 20) were purposively recruited from phase 1, and bereaved caregivers (n = 10) were purposively recruited via voluntary organisation, social media and email. Results: More than half the caregivers (53%) had levels of distress associated with depression (Zarit Burden score >24). Caregiver depression score, preparedness for caregiving and patients' depression score predicted caregiver burden. Qualitative analysis identified an overarching theme of lack of future care planning and four subthemes: (1) seeking emotional support from someone who understands, (2) want information on prognostication, (3) lack of knowledge on how to and where to get support and (4) require knowledge on what to expect at the end of life. Conclusion: Caregivers have unmet needs and feel unprepared for the future. Implementation of future care planning by clinical teams should address patient and caregiver support needs and in turn alleviate caregiver burden. [ABSTRACT FROM AUTHOR]

Increasing numbers of operations in small infants with complex congenital heart disease are being carried out in the UK year on year, with more surviving the initial operation. However, even after successful surgery some of these infants remain fragile when they are discharged home. The aim of the study was to elicit parents' experiences of caring for a child with complex needs after major congenital heart surgery. We conducted a qualitative study involving semi-structured interviews with parents of 20 children (aged <1-5 months at hospital discharge), who had undergone open heart surgery and subsequently died or been readmitted unexpectedly to intensive care following their initial discharge home. Feeding difficulties following discharge from the specialist surgical centre emerged as one of the most significant parental concerns spontaneously raised in interviews. For some parents the impact of feeding difficulties overshadowed any other cardiac concerns. Key themes centred around feeding management (particularly the practical challenges of feeding their baby), the emotional impact of feeding for parents and the support parents received or needed after discharge with respect to feeding. Caring for a child with congenital heart disease following surgery is demanding, with feeding difficulties being one of the most significant parent stressors. Local health professionals can be a good source of support for parents provided that they are well informed about the needs of a cardiac baby and have realistic expectations of weight gain. Specialist surgical centres should consider addressing issues of parental stress around feeding and weight gain prior to hospital discharge. © 2016 Blackwell Publishing Ltd [ABSTRACT FROM AUTHOR]

Objective: This qualitative study was imbedded in a randomized controlled trial evaluating the addition of geriatricians to usual care to enable the comprehensive geriatric assessment process with older patients on acute medical units. The qualitative study explored the perspectives of intervention participants on their care and treatment. Design: A constructivist study incorporating semi-structured interviews that were conducted in patients’ homes within six weeks of discharge from the acute medical unit. These interviews were recorded, transcribed, and analysed using thematic analysis. Setting: An acute medical unit in the United Kingdom. Participants: Older patients (n = 18) and their informal carers (n = 6) discharged directly home from an acute medical unit, who had been in the intervention group of the randomized controlled trial. Results: Three core themes were constructed: (1) perceived lack of treatment on the acute medical unit; (2) nebulous grasp of the role of the geriatrician; and (3) on-going health and activities of daily living needs postdischarge. These needs impacted upon the informal carers, who either took over, or helped the patients to complete their activities of daily living. Despite the help received with activities of daily living, a lot of the patients voiced a desire to complete these activities themselves. Conclusions: The participants perceived they were just monitored and observed on the acute medical unit, rather than receiving active treatment, and spoke of on-going unresolved health and activity of daily living needs following discharge, despite receiving the additional intervention of a geriatrician. [ABSTRACT FROM AUTHOR]

Background Coeliac disease (CD) is managed by life-long adherence to a gluten-free diet and dietitians have the potential to facilitate this. Patient involvement through shared decision-making is central to behaviour-change skills used by dietitians, although there is little evidence supporting its inclusion in evaluating dietetic interventions. The present study aimed to explore patients' preferences for diet and nutrition-related outcomes in CD. Methods Adults with CD or adult carers of children with CD were invited through support networks. Participants took part in a telephone, face-to-face interview or focus group which was audio-recorded and transcribed. Themes were developed using a framework method. Ethical approval was obtained. Results Twenty-nine adult patients and five parents of CD children participated 0-34 years after diagnosis. Four main outcome-related themes emerged: (i) Participants wanted information specific to their lifestyle and time since diagnosis, focussing on food containing gluten, practical issues, prescribable items and general nutrition. (ii) The degree of satisfaction with the consultation process impacted on participants' experience, including the dietitian's CD expertise, consistency of the dietitian seen, and the frequency and length of appointments. (iii) Health concerns were important to participants and focussed on risk of osteoporosis, unwanted weight gain, and the fat and sugar content of manufactured gluten-free products. (iv) Clinical monitoring, including bone scans and antibody measurements, was mentioned but was not described as being of importance for most participants. Conclusions The outcomes preferred by CD patients and carers focussed primarily on information and resources received and satisfaction with their dietetic consultation. [ABSTRACT FROM AUTHOR]

Aim The aim of this study was to discover and describe how patients, carers and case management nurses define safety and compare it to the traditional risk reduction and harm avoidance definition of safety. Background Care services are increasingly being delivered in the home for patients with complex long-term conditions. However, the concept of safety remains largely unexplored. Deign A sequential, exploratory mixed method design. Methods A qualitative case study of the UK National Health Service case management programme in the English UK National Health Service was deployed during 2012. Thirteen interviews were conducted with patients ( n = 9) and carers ( n = 6) and three focus groups with nurses ( n = 17) from three community care providers. The qualitative element explored the definition of safety. Data were subjected to framework analysis and themes were identified by participant group. Sequentially, a cross-sectional survey was conducted during 2013 in a fourth community care provider (patient n = 35, carer n = 19, nurse n = 26) as a form of triangulation. Findings Patients and carers describe safety differently to case management nurses, choosing to focus on meeting needs. They use more positive language and recognize the role they have in safety in home-delivered health care. In comparison, case management nurses described safety similarly to the definitions found in the literature. However, when offered the patient and carer definition of safety, they preferentially selected this definition to their own or the literature definition. Conclusion Patients and carers offer an alternative perspective on patient safety in home-delivered health care that identifies their role in ensuring safety and is more closely aligned with the empowerment philosophy of case management. [ABSTRACT FROM AUTHOR]

Caring for a child with a life-limiting condition brings a number of challenges and many families require additional support. The need for services to move away from a 'one size fits all' approach to a personalised care planning approach is well recognised, as is the value of establishing a robust way of assessing family members' differing needs. A number of assessment tools that consider individuals' holistic needs already exist. These are predominantly for the adult cancer population and exclude consideration of the child in its system. There was therefore a need to develop a tool that would appropriately meet the needs of children and parents who access services provided by a children's hospice. The tool was evaluated qualitatively. Feedback was positive; the experience of professionals was one of concordance with their ethical stance, improved communication, improved documentation and the wish to embed the tool into daily practice. [ABSTRACT FROM AUTHOR]

Background: The majority of people with dementia in the UK die in care homes. The quality of end of life care in these environments is often suboptimal. The aim of the present study was to explore the context, mechanisms and outcomes for providing good palliative care to people with advanced dementia residing in UK care homes from the perspective of health and social care providers. Method: The design of the study was qualitative which involved purposive sampling of health care professionals to undertake interactive interviews within a realist framework. Interviews were completed between September 2012 and October 2013 and were thematically analysed and then conceptualised according to context, mechanisms and outcomes. The settings were private care homes and services provided by the National Health Service including memory clinics, mental health and commissioning services in London, United Kingdom. The participants included 14 health and social care professionals including health care assistants, care home managers, commissioners for older adults' services and nursing staff. Results: Good palliative care for people with advanced dementia is underpinned by the prioritisation of psychosocial and spiritual care, developing relationships with family carers, addressing physical needs including symptom management and continuous, integrated care provided by a multidisciplinary team. Contextual factors that detract from good end of life care included: an emphasis on financial efficiency over person-centred care; a complex health and social care system, societal and family attitudes towards staff; staff training and experience, governance and bureaucratisation; complexity of dementia; advance care planning and staff characteristics. Mechanisms that influence the quality of end of life care include: level of health care professionals' confidence, family uncertainty about end of life care, resources for improving end of life care and supporting families, and uncertainty about whether dementia specific palliative care is required. Conclusions: Contextual factors regarding the care home environment may be obdurate and tend to negatively impact on the quality of end of life dementia care. Local level mechanisms may be more amenable to improvement. However, systemic changes to the care home environment are necessary to promote consistent, equitable and sustainable high quality end of life dementia care across the UK care home sector. [ABSTRACT FROM AUTHOR]

Quality of care is a prominent discourse in modern health‐care and has previously been conceptualised in terms of ethics. In addition, the role of knowledge has been suggested as being particularly influential with regard to the nurse–patient–carer relationship. However, to date, no analyses have examined how knowledge (as an ethical concept) impinges on quality of care. Qualitative semi‐structured interviews were conducted with 26 patients with palliative and supportive care needs receiving district nursing care and thirteen of their lay carers. Poststructural discourse analysis techniques were utilised to take an ethical perspective on the current way in which quality of care is assessed and produced in health‐care. It is argued that if quality of care is to be achieved, patients and carers need to be able to redistribute and redevelop the knowledge of their services in a collaborative way that goes beyond the current ways of working. Theoretical works and extant research are then used to produce tentative suggestions about how this may be achieved. [ABSTRACT FROM AUTHOR]

Background: When the time comes, most people wish to die at home. Nevertheless, many deaths occur in hospital, often because of delays in the discharge process. This study explored the issues surrounding rapid discharge from hospital in the final days of life, and evaluated the contribution of a discharge sister role. Methods: A qualitative design was used, incorporating focus groups and interviews with key stakeholders. A total of 75 staff and 7 carers participated. Results: Participants highlighted the small window of opportunity available to facilitate a rapid but safe discharge from hospital. Early recognition of the last days of life was vital as was the availability of a skilled health professional, such as the discharge sister, to coordinate the patient's journey from hospital to preferred place of death. Conclusions: Rapid discharge is challenging and requires high levels of skill. The discharge sister navigated complex organisational systems to facilitate rapid discharge for those who might otherwise have died in hospital. [ABSTRACT FROM AUTHOR]

This paper describes the impact that learning about recovery has on mental health carers, exploring the implications of this research for UK social work and beyond. A steering group co-produced a training intervention on recovery that was delivered by the first author and a carer, both with experiences of recovery, to eleven carers. Mainly qualitative data, with supplementary socio-demographic data, were collected to evaluate the impact of this training. Thematic analysis was applied to the data. Findings suggest that being more 'recovery- aware' gives carers increased hope and optimism for the future. Awareness of the impact of caring upon the service user's life helps carers to promote recovery in their relative, and gain confidence in their own expertise-by-caring. Professional care is fundamental to recovery but needs to build on a partnership model. The carers evaluated the training as helpful, and valued its authenticity in being led by trainers with experience of recovery. Carers' expectations of professional practice are highlighted, with different approaches discussed that support effective carer involvement in their relative's care. Recognition of carers' expertise-by-caring demands a new approach to mental health care, with significant implications for British social work practice. [ABSTRACT FROM AUTHOR]

Reminiscence therapy has the potential to improve quality of life for people with dementia. In recent years reminiscence groups have extended to include family members, but carers’ experience of attending joint sessions is undocumented. This qualitative study explored the experience of 18 family carers attending ‘Remembering Yesterday Caring Today’ groups. Semi-structured interviews were transcribed and subjected to thematic analysis. Five themes were identified: experiencing carer support; shared experience; expectations (met and unmet), carer perspectives of the person with dementia’s experience; and learning and comparing. Family carers’ experiences varied, with some experiencing the intervention as entirely positive whereas others had more mixed feelings. Negative aspects included the lack of respite from their relative, the lack of emphasis on their own needs, and experiencing additional stress and guilt through not being able to implement newly acquired skills. These findings may explain the failure of a recent trial of joint reminiscence groups to replicate previous findings of positive benefit. More targeted research within subgroups of carers is required to justify the continued use of joint reminiscence groups in dementia care. [ABSTRACT FROM AUTHOR]

A short series of articles in Nursing Older People, starting in September, presents case study examples of the positive work achieved by trusts that participated in the RCN's development programme to improve dementia care in acute hospitals. This introductory article reports on the independent evaluation of the programme. The programme included a launch event, development days, site visits, ongoing support by the RCN lead and carer representatives and a conference to showcase service improvements. The evaluation drew on data from a survey, the site visits, trust action plans and a range of self-assessment tools for dementia care. The findings highlight substantial progress towards programme objectives and learning outcomes and suggest that the programme provided the focus, impetus and structure for trusts to make sustainable changes. It also equipped participants with the strategies and confidence to change practice. Recommendations are made for taking the programme forward. [ABSTRACT FROM AUTHOR]

Aims and objectives To explore bereaved family carers' perceptions and experiences of a hospice at home service. Background The increasing demand for the development of home-based end-of-life services is not confined to the western world; such services are also emerging in resource-poor countries where palliative care services are developing with limited inpatient facilities. Despite this growing trend, studies show a variety of interrelated factors, with an emphasis on the availability of informal carers and their ability to cope, which can influence whether terminally ill patients actually remain at home. A hospice at home service was developed to meet patients' and families' needs by providing individually tailored resources. Design A qualitative study. Methods Data were collected by semi-structured, digitally recorded interviews from 20 family carers who had experienced the service. Interviews were transcribed verbatim and a thematic approach adopted for analysis. Results All participants reported a personal positive impact of the service. Family carers commented the service provided a valued presence, they felt in good hands and importantly it helped in supporting normal life. Conclusions The impact of an individualised, targeted, hospice at home service using dedicated, palliative care trained, staff, is perceived positively by family carers and importantly, supportive of those with additional caring or employment commitments. Relevance to clinical practice The emergence of hospice at home services has resulted in more options for patients and their families, when the increased amount of care a family member has to provide in these circumstances needs to be adequately supported, with the provision of a flexible service tailored to individual needs and delivered by appropriately trained staff. [ABSTRACT FROM AUTHOR]

Since the early 1990s, UK social care policy has committed to supporting carers. Legislation ( England and Wales) over this time period has recognised the importance of separate carer assessments that take into account an individual's ability and willingness to care. This paper considers carer assessment from the perspective of social care practitioners. It reports on qualitative data from a carer research programme that spans over 20 years (1993 to present) and includes 383 in-depth interviews with social care practitioners across England and Wales. Offering unique longitudinal insights, we identify some persistent tensions associated with the translation of UK carer assessment policy into social care practice. We explore practitioners' long-standing ambivalence towards carer assessment and their reluctance to evidence carer need via a separate assessment process. Deficits relating to the conduct of carer assessment are identified. For example, the reliance on structured, problem-focused assessment protocols that restrict discussions to the personal care aspects of caring and fail to capture the complex, diverse lives that carers lead. Carer assessments do not reflect the reciprocal nature of many caring relationships, as a one-way direction of care is assumed. They do not take into account the broader support network of individuals who may be involved in helping someone with complex care needs. Carer willingness to care continues to be taken for granted and planning for the future is a significant gap in carer assessment practice. The proposed changes to the social care systems across England and Wales provide a timely opportunity to review the process and conduct of carer assessment. Policy guidance needs to clarify the links between service user and carer assessments and the way these align within broader assessment and care management frameworks. Assessment tools that encourage a narrative approach to carer assessment and capture the affective aspects of care-giving could benefit future practice. [ABSTRACT FROM AUTHOR]

Purpose – Carers play a vital role in looking after people with intellectual disabilities (ID). Caring role can be stressful and challenging in nature. Carers use various coping strategies to deal with stressors. The purpose of this paper is to explore coping strategies of carers looking after people with ID and dementia. Design/methodology/approach – Qualitative methodology was used to explore coping strategies. Focus groups and face-to-face interviews were carried out. These interviews were transcribed and analysed using thematic analysis. Findings – Nine interviews with carers (six paid carers and three family carers) and two focus groups with nursing staff looking after people with ID were carried out. Three key themes of “Narrative”, “Strategy toolbox” and “Compartmentalisation” emerged from analysis. Narrative and strategy took box were further subthemed. Carers had narratives about them and the person they look after. These “narratives” helped them to deal with day to day stressors. They also carried a “strategy toolbox”, which they used when they were in stressful situations. Compartmentalisation helped them to separate their personal life from work life as a carer. Originality/value – Understanding carers’ coping strategies is important when planning services to help carers who play an important role in our society. Professionals can support carers to understand and improve their existing coping skills and help them to thrive in their role as carers. [ABSTRACT FROM AUTHOR]

Aim To explore the impact of being a family carer to patients with stage 5 chronic kidney disease managed without dialysis. Background Increasing numbers of patients with renal disease worldwide are making the decision not to embark on dialysis. This group has significant physical and psychological symptom burdens similar to or greater than those in advanced cancer patients. Little is known about the impact on family carers. Design Exploratory, qualitative design. Methods The study was undertaken with 19 carers caring for patients managed in a Renal Supportive Care Service in the UK between 2006-2008. Sixty-one semi-structured interviews and detailed field notes inform the analysis. Findings 'Caring from diagnosis to death' was the overarching theme illustrated by three sub-themes: (i) Caregiver's plight - making sense of the disease and potential deterioration; (ii) Having to care indefinitely; and (iii) Avoiding talk of death. 'Caring from diagnosis to death' coincides with an original concept analysis of renal supportive care, which is considered an adjunct to the management of patients with renal disease at all stages of their illness. Conclusion There is a clear need for further research internationally and theory-based nursing interventions to support carers of patients managed without dialysis. The development of a holistic, integrated care pathway based on carer perspectives, which includes identification of information needs related to original diagnosis, associated comorbidities, treatment options, prognosis, and assistance in developing strategies to manage communication with patients as the end of life approaches, is required. [ABSTRACT FROM AUTHOR]

Aim To explore caring and coping among carers of stroke survivors and identify factors that had an impact on their lives. Background Informal carers carry the main responsibility for the care of stroke survivors in the community, which can have a detrimental effect on the health and well-being of carers. However, the circumstances of caring differ for each carer: this study identifies the diverse factors that can cause caring to be burdensome for some carers and less so for others. Design Qualitative descriptive study. Methods A convenience sample of 30 carers of stroke survivors were interviewed in 2008-2010, following hospital discharge of the stroke survivor. Results The impact that the stroke event had on the participants of this study varied enormously. Not only did the health status and well-being of the stroke survivors vary greatly but it was also clear that many different factors had an influence on the impact of the stroke on the carer and on how each of them coped. Nine thematic categories were identified, which fell into three broad categories: (1) the impact of the stroke event on the carer; (2) the extrinsic factors that support the caring scenario; and (3) the intrinsic factors that help a carer to cope with the new role. Conclusions This study provided an insight into the circumstances where caring for stroke survivors takes place. These factors that have an impact on caring and carers should inform the nursing assessment of needs of carers of stroke survivors in the community. [ABSTRACT FROM AUTHOR]

Purpose - The research explored the way in which different services, providers and other key players work together in housing with care (HWC) schemes and the impact of this on the quality of life of the older people living in them, especially those with high support needs. Methods - This qualitative study included interviews with 47 residents and five relatives at !9 private and not-for-profit schemes across the UK and 52 professionals from provider, statutory and other relevant organisations. Findings - Most participants were very satisfied with the services in HWC but a third described problems linked to "boundary" issues, where gaps, delays or confusion had arisen at the interface between teams, organisations or professional groups. Gaps often occurred where tasks were relatively small: they affected the quality of life of older people with high support needs but did not necessarily outweigh the benefits of living in HWC. Practical implications - We identify ways of improving integrated working in HWC and beyond. The paper is relevant to those commissioning and providing services to older people and to all those with an interest in integrating care and housing. Originality/value - This is the first UK-wide, cross-sector study to focus specifically on the boundaries between roles and responsibilities and their impact on residents in HWC. [ABSTRACT FROM AUTHOR]

Background The speech and language therapy/pathology (SLT/SLP) profession is characterized by extreme 'occupational sex segregation', a term used to refer to persistently male- or female-dominated professions. Men make up only 2.5% of all SLTs in the UK, and a similar imbalance is found in other countries. Despite calls to increase diversity in the allied health professions more generally, research into the reasons for occupational sex segregation and gender as a potential key factor remains scarce. Aims This study aims to explore the potential role of gender/gendered discourses in people's decision to pursue a career in SLT/SLP. It seeks to illustrate how gendered assumptions/expectations/discourses continue to construct SLT as a 'gendered' profession, and to make some recommendations in this area for SLT recruitment and practice. Methods & Procedures The study adopted a qualitative design which elicited research participants' views, knowledge and experiences (in their own words) in relation to the research questions. Data collection involved two iterative phases: a preliminary data phase-which involved semi-structured interviews with newly qualified SLT graduates and practising SLTs, and the completion of questionnaires by undergraduate SLTs-and a main/focus group phase. In the focus group phase reported in this paper, six focus groups in total were held with SLTs, teachers of SLT, and careers advisors in London, UK. The data were analysed qualitatively using grounded theory principles, thematic analysis and discourse analysis. Outcomes & Results The findings extend our knowledge and understanding of gender as a parameter of people's motivations and perceptions, which can influence their choice of career (e.g. as regards pay and flexibility). The findings also show that discourses around women as carers, nurturers and communicators constitute key ways through which the SLT profession continues to be constructed as 'women's work'. The topic of structural gender inequalities in the profession was also discussed in the data. Some recommendations for change, with implications for SLT recruitment and practice, were made by the participants themselves. Conclusions & Implications Gender imbalance in SLT needs to be researched further in order to help address inequalities, re-evaluate professional practices and develop service delivery in the profession. This area also needs to be researched via analysis that goes beyond gender distribution in numerical terms to consider the complex perceptions or discourses around gender and work. Cross-disciplinary and comparative perspectives in future research would also be fruitful. [ABSTRACT FROM AUTHOR]

Background To date, no studies have explored the role of carers in supporting adults with intellectual disabilities (ID) and obesity during a weight loss intervention. The present study explored perceptions of carers supporting adults with ID, as they participated in a 6-month multi-component weight loss intervention (TAKE 5). Methods Semi-structured interviews were used to explore the experiences of 24 carers. The transcripts were analysed qualitatively using thematic analysis. Results Three themes emerged from the analysis: carers' perceptions of participants' health; barriers and facilitators to weight loss; and carers' perceptions of the weight loss intervention. Data analysis showed similarities between the experiences reported by the carers who supported participants who lost weight and participants who did not. Lack of sufficient support from people from the internal and external environment of individuals with ID and poor communication among carers, were identified as being barriers to change. The need for accessible resources tailored to aid weight loss among adults with ID was also highlighted. Conclusion This study identified specific facilitators and barriers experienced by carers during the process of supporting obese adults with ID to lose weight. Future research could utilise these findings to inform appropriate and effective weight management interventions for individuals with ID. [ABSTRACT FROM AUTHOR]

This paper reports and critically discusses, against the literature on culturally sensitive and cultural competency practices, the findings of a qualitative study which explored the needs and expectations of older people and their carers from eight different migrant communities and the white British majority. The study investigated the accessibility and acceptability of care and support services in Bradford, UK, a city with a large migrant population. A total of 167 study participants were recruited from February 2008 to October 2008; of these 134 were older people and 33 carers. The age ranged from 25 to 90 years. The study found that older migrants and their carers described expectations of services as complex constructions of ‘abstract expectations’, the study participants’ general beliefs regarding what services should be about, and ‘pragmatic expectations’, their specific views about how they would like to receive care and access services. All groups, irrespective of their ethnic background, expressed three ‘abstract expectations’: high standards of good practice; cultural understanding; and responsiveness to individual expectations. This similarity did not imply a similarity in their preferences for how services should provide for their ‘abstract expectations’. Dignity was a central expectation for all older people in the care of their bodies. However, a number of culturally specific ‘pragmatic expectations’ emerged in the practices that older people and carers associated with maintaining dignity in older age. Nevertheless, differences could not always be explained as an outcome of different cultural backgrounds, but were rather linked to individual characteristics and life experiences. This study indicates that whether and how older migrants’ knowledge systems inform their expectations of care and support should be objects of investigation rather than taken for granted, as implied in some literature on culturally sensitive practices. Exploration of older migrants’ knowledge systems may help us to understand if older migrants’ expectations differ with regard to what they expect to receive from a certain service, their ‘abstract expectations’, and/or how they expect to receive it, their ‘pragmatic expectations’. This information should help to identify if different communities require different culturally competent interventions and of what type: interventions at the organisational level, at the structural level or at the clinical level. [ABSTRACT FROM AUTHOR]

Ensuring the development and delivery of person-centred care in services providing respite care and short breaks for people with dementia and their carers has a number of challenges for health and social service providers. This article explores the role of organisational culture in barriers and facilitators to person-centred dementia care. As part of a mixed-methods study of respite care and short breaks for people with dementia and their carers, 49 telephone semi-structured interviews, two focus groups ( N = 16) and five face-to-face in-depth interviews involving front-line staff and operational and strategic managers were completed in 2006-2007. Qualitative thematic analysis of transcripts identified five themes on aspects of organisational culture that are perceived to influence person-centred care: understandings of person-centred care, attitudes to service development, service priorities, valuing staff and solution-focused approaches. Views of person-centred care expressed by participants, although generally positive, highlight a range of understandings about person-centred care. Some organisations describe their service as being person-centred without the necessary cultural shift to make this a reality. Participants highlighted resource constraints and the knowledge, attitudes and personal qualities of staff as a barrier to implementing person-centred care. Leadership style, the way that managers' support and value staff and the management of risk were considered important influences. Person-centred dementia care is strongly advocated by professional opinion leaders and is prescribed in policy documents. This analysis suggests that person-centred dementia care is not strongly embedded in the organisational cultures of all local providers of respite-care and short-break services. Provider organisations should be encouraged further to develop a shared culture at all levels of the organisation to ensure person-centred dementia care. [ABSTRACT FROM AUTHOR]