Search

An extensive body of evidence shows the impact of being the direct victim of a serious assault. However, much less is known about the impact on the family and close relatives of victims, who may be considered indirect victims. Based on analyses of the 2014 Adult Psychiatric Morbidity Survey, a face-to-face, cross-sectional probability-sample survey of 7519 adults aged 16 and over in England, this article estimates what proportion of the population was closely related to a victim of serious assault, and whether this experience was associated with a higher prevalence of feeling unsafe, depression and anxiety disorder, post-traumatic stress, self-harm, and suicidality. Descriptive and multivariable regression analyses were conducted, adjusting for complex survey design and potentially confounding factors. Results show that one in twenty adults (4.5%, n = 345) was closely related to a victim of serious assault (95% confidence interval (CI):4.0-5.2%). Close adult relatives of assault victims were more likely than the rest of the population to have been direct victims of violence and abuse themselves, to have experienced multiple other adversities, and to live in more deprived neighbourhoods. However, even when controlling for these experiences, relatives of victims had adjusted odds of feeling unsafe in the neighbourhood where they lived 2.36 times higher than the rest of the population (CI:1.26-4.44), and their odds of having a depressive or anxiety disorder were 1.37 times higher (0.99-1.90). These analyses indicate that relatives in England may already be vulnerable, with potential to also be further affected by the experiences of family members. To more fully account for the effects of violence in society, research with indirect victims of serious violence in the context of their own experiences of direct victimization and wider adversities is required. This could be factored into a broader remit for victim support services which includes support for victims' families., Competing Interests: Declaration of competing interest On behalf of all authors, the corresponding author states that there are no conflicts of interest., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Support for children and young people who provide unpaid care is important to help prevent negative impacts of caregiving on their education, employment, mental health, and social relationships. We aimed to address an evidence gap about what services and support are needed from young carers' perspectives. We carried out focus groups or in-depth interviews with 133 carers aged 9-25 in England. Expressed unmet need for services and support could be grouped in three categories: support that would reduce or remove young people's need to provide care, help improve the lives of the people they care for, mitigate against impacts of providing care on their mental health, wellbeing, education, social participation and leisure activities, and, whilst they are still providing care, assist them in their caring role. Action is needed to address these currently unmet needs and implement young carers' and their families' rights to support., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Brimblecombe et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Ending familial co-residence, termed 'moving on' by participants, is an increasingly relevant life transition for people with a learning disability due to increasing life expectancy and policy developments. Nevertheless, there is an absence of research exploring this transition experience in a United Kingdom (UK) context. This constructivist grounded theory study therefore aimed to explore, conceptualise, and theorise the 'moving on' experiences of adults with a learning disability and their families. This article reports the experiences of five adults with a learning disability and nine family members in England, UK. Narrative interviews and creative storybook methods were used to collect data between April 2015 and May 2016. Constant comparative methods, theoretical sampling, and memo writing were used throughout data collection and analysis. Participants with a learning disability presented personal growth and greater life fulfilment over the course of the transition; they flourished. In parallel, family members relinquished their care responsibilities. Importantly, the iterative and reciprocal relationship between flourishing and relinquishing shows that ongoing family member involvement is crucial during and following relocation. Family members identified factors that potentially inhibit relinquishing: pressure to 'let go', different perceptions of independence between family members and service providers, inadequate future investment, and rapport with professional carers. These novel insights led to the generation of the first known mid-range theory concerning this transition, entitled 'Moving on: flourishing and relinquishing'. Findings will guide future research in this field and facilitate the design of appropriate support for people with a learning disability and their families., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Caregiving is recognised as a source of stress with potential for negative health impacts as well as positive outcomes and development of resilience. For young carers, children, and adolescents providing care for close family members, adaptation through resilience is crucial, yet work using a resilience approach is limited. This study explored protective factors and pathways to resilience in a sample of young carers, through application of the socioecological model in caring relationships. An in-depth qualitative approach was used, with in-person interviews facilitated by auto-driven photo elicitation. Deductive thematic analysis was applied, framed by three levels (individual, community, and society) of the socioecological model of resilience. Twelve participants (nine girls and three boys) aged 5-18 years, each providing care to a family member, were recruited using opportunity and volunteer sampling via carers' centres in the southwest of England. Ten key themes were identified, four at the individual level: pre-empting challenges and planning, cognitive strategies, emotional strategies, and seeking solitude; three at the community level: family support, friendships, and pets and inanimate objects; and three at the society level: professional support, access to caregiver activities and community, and being outdoors. The location of themes at each level indicated relevance of the socioecological model to identification of protective factors in a young carer population. These findings have important applications for guidance to charities and organisations supporting young carers. Identification of factors that promote resilience offers support for the development of well-informed interventions, which harness these protective factors to develop resilience and improve health for young carers., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Introduction: Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases., Aim: To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics., Design: National observational study of bereaved carers. Questions included informal end-of-life caregiving into the 2017 Health Survey for England including estimated recalled frequency, duration and intensity of care provision. We estimated replacement costs for a decedent's last year of life valuing time at the price of a substitutable activity. Spearman rank correlations and multivariable linear regression were used to explore relationships with last year of life costs., Setting/participants: Adult national survey respondents - England., Results: A total of 7997 adults were interviewed from 5767/9612 (60%) of invited households. Estimated replacement costs of personal care and other help were £27,072 and £13,697 per carer and a national cost of £13.2 billion and £15.5 billion respectively. Longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater deprivation were associated with increased costs. Female sex, and not accessing 'other care services' were related to higher costs for other help only., Conclusion: We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Despite the high prevalence of mental health difficulties in children and young people with long-term health conditions (LTCs), these difficulties and experiences are often overlooked and untreated. Previous research demonstrated the effectiveness of psychological support provided via a drop-in mental health centre located in a paediatric hospital. The aim of this prospective non-randomised single-arm multi-centre interventional study is to determine the clinical effectiveness of drop-in mental health services when implemented at paediatric hospitals in England., Methods: It is hypothesised that families who receive psychological interventions through the drop-in services will show improved emotional and behavioural symptoms. Outcomes will be measured at baseline and at 6-month follow-up. The primary outcome is the difference in the total difficulties score on the Strengths and Difficulties Questionnaire (SDQ) reported by parent or child at 6 months. Secondary outcomes include self and parent reported Paediatric Quality of Life Inventory (PedsQL), self-reported depression (PHQ-9) and anxiety measures (GAD-7) and family satisfaction (CSQ-8)., Discussion: This trial aims to determine the clinical effectiveness of providing psychological support in the context of LTCs through drop-in mental health services at paediatric hospitals in England. These findings will contribute to policies and practice addressing mental health needs in children and young people with other long-term health conditions., Trial Registration: ISRCTN15063954, Registered on 9 December 2022., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Roach et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

Eligible relatives are given rights and powers in the compulsory treatment of people with mental health problems in several international jurisdictions, including within England and Wales. However, little attention has been given to whether relatives feel legally literate or competent to fulfil such roles. This article examines this issue through focussing on the experiences of Nearest Relatives, who are given rights and powers during Mental Health Act 1983 (MHA) assessments for compulsory admission in England and Wales. Interviews with nineteen Nearest Relatives in England were conducted and were thematically analysed. Three themes were identified. First, NRs spoke about their awareness and knowledge of the role. They predominantly reported negative experiences in which they received no or little information. They also reported that professionals assumed they possessed legal knowledge, and their legal knowledge was largely self-taught. Secondly, NRs reported uncertainty about their own rights and powers, noting the role lacked status or informational or emotional support. Third, NRs highlighted areas for legal reform, stating that the NR role was important, but required specialist support systems for NRs. The findings of this study indicate greater attention needs to be given by law and policy makers to support relatives' understanding of their rights and powers under the MHA, if the NR role is to be effective in helping to safeguard patient rights under the European Convention on Human Rights. These include the right in Article 5 not to be arbitrarily deprived of one's liberty and the right to a private and family life in Article 8. Legislators also need to take account of these factors when considering proposals to reform mental health law in England and Wales., Competing Interests: Declaration of competing interest ‘I was going into it blind’: Nearest relatives, legal literacy and the Mental Health Act 1983. I confirm there are no declarations of interest., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

There are approximately 1.3 million stroke survivors in the UK, with the majority of them relying on family caregivers for support. However, the needs of family caregivers are not routinely assessed by most services. The aim of this study was to explore the experiences of stroke family caregivers following the implementation of the Care Act, 2014. A total of 16 semi-structured, digitally recorded face-to-face qualitative interviews were conducted with a purposive sample of stroke family caregivers in north-west England. Thematic analysis was undertaken. Two themes were identified: the effects of caregiving and the unmet needs of the family caregivers. Despite changes to legislation, family caregivers of stroke survivors continue to experience challenges, such as financial problems, information needs, and a lack of respite and emotional support when providing care. Existing approaches to identifying and supporting caregiver needs are insufficient. Proactive approaches are required to ensure the needs of family caregivers are identified and addressed on a regular basis.

Objective: To understand healthcare system facilitators and barriers to the delivery of palliative care for children with life-limiting and life-threatening conditions and their family members., Design: Focus groups with children's palliative care professionals. Data were analysed using thematic analysis., Setting: Four regions of England (West Midlands, South West, Yorkshire and Humber, and London) from December 2017 to June 2018., Participants: Healthcare professionals (doctors, nurses and allied healthcare professionals) working in children's palliative care services., Findings: A total of 71 healthcare professionals participated in the focus groups. Three overarching themes were identified which influenced whether and when children were referred to and started to receive palliative care: (1) the unspoken background of clinical uncertainty which often delayed palliative care; (2) the cultural 'collusion of immortality', where conversations about the possibility of dying can be avoided or deferred; and (3) the role of paediatric palliative care teams in 'illuminating the blind spot' of palliative care as well as providing hands-on care., Conclusions: Palliative care is a holistic approach to care that focuses on quality of life for people living with life-limiting and life-threatening conditions that can be delivered alongside active treatment. There is a need to prioritise and integrate this into healthcare services for children more effectively if improvements in care are to be realised. While more specialist paediatric palliative care services are needed, the unspoken background of clinical uncertainty needs to be addressed together with the collusion of immortality within healthcare culture and organisations., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.)

Purpose: Capture change in family members' experiences as they look after patients during chemotherapy, and understand variability in their needs for support., Method: Longitudinal digitally-recorded qualitative semi-structured interviews with family carers at the beginning, mid-point, and end of treatment. Twenty-five family members (17 women, 8 men), mean age 53, were interviewed. Fifteen participants were supporting a relative having chemotherapy with curative intent, and 10 a patient receiving palliative chemotherapy. They were recruited from two UK locations: a regional cancer centre in Southampton and a comprehensive cancer centre in London. Sixty-three interviews were conducted in total, and the data were analysed using Framework Analysis., Results: Three themes were generated from the data: Changing lives, Changing roles; Confidence in caring, and Managing uncertainty. These captured family carers' evolving needs and sense of confidence in caregiving during chemotherapy. Carers reported considerable anxiety at the outset of treatment which persisted throughout. Anxiety was underpinned by fears of disease recurrence or progression and concerns about treatment outcomes., Conclusions: This study presents original fine-grained work that captures the changes over time in family carers' experiences of chemotherapy and their adaptation to caregiving. It provides fundamental evidence of the challenges that cancer carers face during patients' treatment; evidence that can be used as a basis for carer assessment and to build much-needed carer interventions. Oncology nurses should assess carers': ability to care; needs for information and support to prepare them for this; wellbeing over time; and, any support they may require to prevent them from becoming overburdened., (Copyright © 2020. Published by Elsevier Ltd.)

Background: We aimed to estimate the clinical effectiveness of Community Occupational Therapy for people with dementia and family carers-UK version (Community Occupational Therapy in Dementia-UK version [COTiD-UK]) relative to treatment as usual (TAU). We hypothesised that COTiD-UK would improve the ability of people with dementia to perform activities of daily living (ADL), and family carers' sense of competence, compared with TAU., Methods and Findings: The study design was a multicentre, 2-arm, parallel-group, assessor-masked, individually randomised controlled trial (RCT) with internal pilot. It was conducted in 15 sites across England from September 2014 to January 2018. People with a diagnosis of mild to moderate dementia living in their own home were recruited in pairs with a family carer who provided domestic or personal support for at least 4 hours per week. Pairs were randomised to either receive COTiD-UK, which comprised 10 hours of occupational therapy delivered over 10 weeks in the person with dementia's home or TAU, which comprised the usual local service provision that may or may not include standard occupational therapy. The primary outcome was the Bristol Activities of Daily Living Scale (BADLS) score at 26 weeks. Secondary outcomes for the person with dementia included the following: the BADLS scores at 52 and 78 weeks, cognition, quality of life, and mood; and for the family carer: sense of competence and mood; plus the number of social contacts and leisure activities for both partners. Participants were analysed by treatment allocated. A total of 468 pairs were recruited: people with dementia ranged from 55 to 97 years with a mean age of 78.6 and family carers ranged from 29 to 94 with a mean of 69.1 years. Of the people with dementia, 74.8% were married and 19.2% lived alone. Of the family carers, 72.6% were spouses, and 22.2% were adult children. On randomisation, 249 pairs were assigned to COTiD-UK (62% people with dementia and 23% carers were male) and 219 to TAU (52% people with dementia and 32% carers were male). At the 26 weeks follow-up, data were available for 364 pairs (77.8%). The BADLS score at 26 weeks did not differ significantly between groups (adjusted mean difference estimate 0.35, 95% CI -0.81 to 1.51; p = 0.55). Secondary outcomes did not differ between the groups. In total, 91% of the activity-based goals set by the pairs taking part in the COTiD-UK intervention were fully or partially achieved by the final COTiD-UK session. Study limitations include the following: Intervention fidelity was moderate but varied across and within sites, and the reliance on primarily proxy data focused on measuring the level of functional or cognitive impairment which may not truly reflect the actual performance and views of the person living with dementia., Conclusions: Providing community occupational therapy as delivered in this study did not improve ADL performance, cognition, quality of life, or mood in people with dementia nor sense of competence or mood in family carers. Future research should consider measuring person-centred outcomes that are more meaningful and closely aligned to participants' priorities, such as goal achievement or the quantity and quality of activity engagement and participation., Trial Registration: Current Controlled Trials ISRCTN10748953., Competing Interests: I have read the journal's policy and the authors of this manuscript have the following competing interests: work funded through NIHR research grant to MO.

Background: Many people move in and out of hospital in the last few weeks of life. These care transitions can be distressing for family members because they signify the deterioration and impending death of their ill relative and forthcoming family bereavement. Whilst there is evidence about psychosocial support for family members providing end-of-life care at home, there is limited evidence about how this can be provided in acute hospitals during care transitions. Consequently, family members report a lack of support from hospital-based healthcare professionals., Methods: The aim of the study was to implement research evidence for family support at the end-of-life in acute hospital care. Informed by Participatory Learning and Action Research and Normalization Process Theory (NPT) we co-designed a context-specific intervention, the Family-Focused Support Conversation, from a detailed review of research evidence. We undertook a pilot implementation in three acute hospital Trusts in England to assess the potential for the intervention to be used in clinical practice. Pilot implementation was undertaken during a three-month period by seven clinical co-researchers - nurses and occupational therapists in hospital specialist palliative care services. Implementation was evaluated through data comprised of reflective records of intervention delivery (n = 22), in-depth records of telephone implementation support meetings between research team members and co-researchers (n = 3), and in-depth evaluation meetings (n = 2). Data were qualitatively analysed using an NPT framework designed for intervention evaluation., Results: Clinical co-researchers readily incorporated the Family-Focused Support Conversation into their everyday work. The intervention changed family support from being solely patient-focused, providing information about patient needs, to family-focused, identifying family concerns about the significance and implications of discharge and facilitating family-focused care. Co-researchers reported an increase in family members' involvement in discharge decisions and end-of-life care planning., Conclusion: The Family-Focused Support Conversation is a novel, evidenced-based and context specific intervention. Pilot implementation demonstrated the potential for the intervention to be used in acute hospitals to support family members during end-of-life care transitions. This subsequently informed a larger scale implementation study., Trial Registration: n/a.

Background: In the regulation of healthcare, the subject of patient and family involvement figures increasingly prominently on the agenda. However, the literature on involving patients and families in regulation is still in its infancy. A systematic analysis of how patient and family involvement in regulation is accomplished across different health systems is lacking. We provide such an overview by mapping and classifying methods of patient and family involvement in regulatory practice in four countries; Norway, England, the Netherlands, and Australia. We thus provide a knowledge base that enables discussions about possible types of involvement, and advantages and difficulties of involvement encountered in practice., Methods: The research design was a multiple case study of patient and family involvement in regulation in four countries. The authors collected 1) academic literature if available and 2) documents of regulators that describe user involvement. Based on the data collected, the authors from each country completed a pre-agreed template to describe the involvement methods. The following information was extracted and included where available: 1) Method of involvement, 2) Type of regulatory activity, 3) Purpose of involvement, 4) Who is involved and 5) Lessons learnt., Results: Our mapping of involvement strategies showed a range of methods being used in regulation, which we classified into four categories: individual proactive, individual reactive, collective proactive, and collective reactive methods. Reported advantages included: increased quality of regulation, increased legitimacy, perceived justice for those affected, and empowerment. Difficulties were also reported concerning: how to incorporate the input of users in decisions, the fact that not all users want to be involved, time and costs required, organizational procedures standing in the way of involvement, and dealing with emotions., Conclusions: Our mapping of user involvement strategies establishes a broad variety of ways to involve patients and families. The four categories can serve as inspiration to regulators in healthcare. The paper shows that stimulating involvement in regulation is a challenging and complex task. The fact that regulators are experimenting with different methods can be viewed positively in this regard.

Chronic respiratory diseases are progressive and often life-limiting illnesses. Patients experience debilitating and troubling symptoms that impact on their quality of life. Despite this, there is under-recognition of patients who may be entering the final year of their life and require palliative care services. The Royal Wolverhampton NHS Trust in partnership with Compton Care has established chronic respiratory disease multidisciplinary team meetings and a combined respiratory and palliative care outpatient clinic to address these issues. This article presents the impact of this service, now in to its fourth year, of delivering palliative care services to patients with chronic respiratory disease.

Aim: The aim of this study was to explore family members' perceptions of a Singing Medicine project undertaken by children with long-term conditions in one children's hospital., Method: A qualitative approach was used involving semi-structured interviews with the family members of children aged 3-14 years who had long-term conditions and were being cared for at one children's hospital in England. Interviews were digitally recorded, anonymised and stored in a password-protected space. Data were analysed using thematic analysis., Findings: Analysis identified five themes: people in purple shirts; music and emotions; being part of a 'hospital family'; distraction therapy; and lasting effects and life after illness and death. The negative effect for children of being separated from their homes and families during long-term hospital stays was evident, but positive effects, such as developing new relationships, were also identified. Participating in the Singing Medicine project provided children with opportunities to express themselves. The concept of belonging to a hospital family emerged from the study, which could potentially reduce stressors and enhance children's well-being and capacity to cope with long-term illness., Conclusion: The findings showed that participation in 'arts-in-health' initiatives such as the Singing Medicine project was associated with benefits for children with long-term conditions and their families, such as a reduction in negative emotions and enhanced well-being through distraction and the sharing of positive experiences. Ensuring that children who spend prolonged periods of time in hospital have opportunities to play and express themselves is a priority for healthcare services., Competing Interests: None declared, (© 2019 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.)

Background: Improving quality of life (QOL) for people with dementia is a priority. In care homes, we often rely on proxy ratings from staff and family but we do not know if, or how, they differ in care homes., Methods: We compared 1056 pairs of staff and family DEMQOL-Proxy ratings from 86 care homes across England. We explored factors associated with ratings quantitatively using multilevel modelling and, qualitatively, through thematic analysis of 12 staff and 12 relative interviews., Results: Staff and family ratings were weakly correlated (ρs = 0.35). Median staff scores were higher than family's (104 v. 101; p < 0.001). Family were more likely than staff to rate resident QOL as 'Poor' (χ2 = 55.91, p < 0.001). Staff and family rated QOL higher when residents had fewer neuropsychiatric symptoms and severe dementia. Staff rated QOL higher in homes with lower staff:resident ratios and when staff were native English speakers. Family rated QOL higher when the resident had spent longer living in the care home and was a native English. Spouses rated residents' QOL higher than other relatives. Qualitative results suggest differences arise because staff felt good care provided high QOL but families compared the present to the past. Family judgements centre on loss and are complicated by decisions about care home placement and their understandings of dementia., Conclusion: Proxy reports differ systematically between staff and family. Reports are influenced by the rater:staff and family may conceptualise QOL differently.

The aim of this study was to evaluate the family impacts of severe dental caries among children. Data from 3859 school-age children (5-, 8-, 12- and 15-year-olds) who participated in the 2013 Children's Dental Health Survey, a national cross-sectional survey in England, Wales and Northern Ireland, were used. Severe dental caries was defined as having at least one tooth with pulpal involvement, ulceration, fistula, or abscess (PUFA). Family impacts were measured using seven items of the Family Impact Scale (FIS). The association between severe dental caries and family impacts was assessed in logistic regression models, adjusting for child's age, gender, and country of residence; parent's marital status, education, and job classification; and area deprivation. Severe dental caries among children showed a significant negative impact on family life (Odds Ratio: 6.00; 95% Confidence Interval: 3.34-10.78). Parents of children with severe dental caries had greater odds of taking time off work (OR: 2.75; 95% CI: 1.16-6.54), reporting the child needed more attention (OR: 4.08; 95% CI: 2.15-7.75), feeling guilty (OR: 6.32; 95% CI: 3.26-12.26), feeling stressed (OR: 7.34; 95% CI: 4.15-12.99), having normal activities disrupted (OR: 5.78; 95% CI: 2.71-12.34), and having sleep disrupted (OR: 4.94; 95% CI: 2.78-8.76). Having severe dental caries was not associated with financial difficulties in the family (OR: 1.64; 95% CI: 0.49-5.51). The observed association between severe dental caries and family impacts was independent of child and family sociodemographic characteristics. The findings underscore the importance of preventive interventions to avoid severe dental caries in children and subsequently reduce negative impacts on their family life.

Objectives: To investigate residents' and relatives' views and experiences of handovers in care homes. This paper reports residents' and relatives' awareness of handovers, knowledge of and views on handover practices and purpose, and views on handover effectiveness. Outcomes, safety and satisfaction in clinical settings are influenced by shift handovers. Despite this link with quality, residents' increasing support needs and the provision of 24 hours care in care homes for older people, little is known about handovers in these settings from a resident and visiting relative perspective., Setting: Five purposively sampled care homes for older people in South East England., Participants: Home managers (n=5), residents (n=16) relatives of residents (n=10) were interviewed; residents (n=15) and their interactions with staff were observed during handover periods. Participation was voluntary and subject to consent. Residents were identified by managers as having mental capacity to take a decision about participation which was then assessed. An ethnographic approach to data collection was taken, preceded by an evidence review., Results: Shift handovers were largely invisible processes to participating residents and relatives, many of whom had given little thought to handover practice, logistics or effectiveness prior to study participation. Their awareness and understanding of handovers, handover practices, and handover purpose and effectiveness varied. There appeared to be an underlying assumption that administrative procedures in care homes would operate without input from residents or relatives. A small number of residents, however, were highly aware of the routine of handovers and the implications of this for the timing of and response to their requests for care or support., Conclusions: The care home setting and perspectives of the effectiveness of handovers may influence awareness of, knowledge of and levels of interest in involvement in handovers., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: Understanding patient and carer perspectives is essential to improving the quality of medication prescribing. This study aimed to explore experiences of psychotropic medication use among people with intellectual disability (ID) and their carers, with a focus on how medication decisions are made., Design: Thematic analysis of data collected in individual semistructured interviews., Participants and Setting: Fourteen adults with ID, 12 family carers and 12 paid carers were recruited from specialist psychiatry services, community groups, care providers and training organisations in the UK., Results: People with ID reported being highly compliant with psychotropic medication, based on a largely unquestioned view of medication as important and necessary, and belief in the authority of the psychiatrist. Though they sometimes experienced medication negatively, they were generally not aware of their right to be involved in medication decisions. Paid and family carers reported undertaking a number of medication-related activities. Their 'front-line' status and longevity of relationships meant that carers felt they possessed important forms of knowledge relevant to medication decisions. Both groups of carers valued decision-making in which they felt they had a voice and a genuine role. While some in each group described making joint decisions about medication with psychiatrists, lack of involvement was often described. This took three forms in participants' accounts: being uninformed of important facts, insufficiently included in discussions and lacking influence to shape decisions. Participants described efforts to democratise the decision-making process by gathering information, acting to disrupt perceived power asymmetries and attempting to prove their credibility as valid decision-making partners., Conclusions: Stakeholder involvement is a key element of medication optimisation that is not always experienced in decisions about psychotropic medication for people with ID. Forms of shared decision-making could be developed to promote collaboration and offer people with ID and their carers greater involvement in medication decisions., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY. Published by BMJ.)

Objectives: Partners and wider family members play a vital role in relation to women's perinatal mental health. Clinical guidelines in the UK and internationally recommend that services supporting women with perinatal mental health difficulties involve and support their families too. However, little is known about family members' needs and experiences, or whether they feel included by mental health services. This study set out to explore this., Methods: This research formed part of a wider study exploring experiences of perinatal mental health care in England. The broader study included semi-structured interviews with 52 women across England who received treatment for a perinatal mental health difficulty, and 32 family members identified by the women as offering them some support. Data from these 84 interviews relating to how services work with partners and families were extracted and analysed thematically., Results: Analysis identified three overarching themes: (1) the centrality of women's families to their perinatal mental health/access to support, (2) experiences of partners and families being excluded by services and (3) ambivalence among women and their families about increasing family involvement/support. We found that partners and families appear to have an important influence on women's perinatal mental health, access to care and interactions with services, but that services tend to focus on individual women (and babies) with little regard for their wider family context. The complexity of involving and supporting partners and families, coupled with anxiety about this among women and their families, reinforces the tendency to marginalise them., Conclusion: Involving women's families and providing the support they need is challenging, but important. Experiences of women and their families of services treating perinatal mental health difficulties suggests greater focus is needed on overcoming barriers to family inclusion and on challenging underlying gender roles and expectations, rather than allowing these to shape and guide practice., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Caring for someone with dementia is one of the most challenging caring roles; however, the demands of the role towards the end of life often mean carers are unable to maintain face-to-face support. The aim of this study was to: (a) Explore the experiences of older (over 65 years) family carers of people with dementia of support towards the end of life; (b) Explore with family carers the role of the internet as a support for them at the end of life. Semi-structured interviews were conducted, with purposive sampling from general practice and research networks to recruit 20 current and former family carers aged 65 and over in England (2016-2017). Interviews were audio-recorded, transcribed, and analysed using thematic analysis. An overarching theme of the "separation of worlds" (the internal caring world and the outside world of society) was identified, with four sub themes: (a) the support role of relationships and social networks; (b) loss as a consequence of caring; (c) reconstruction of life as a carer; and finally; (d) life within and beyond the computer screen. This study demonstrates the complexity of social support at the end of life for family carers depicted in a model of two worlds. The internet can be seen as a viable approach to help carers maintain existing networks, reconstruct networks they have lost or developing new networks to meet their new needs and circumstances as a carer. Future support interventions should focus on a mixed model of technology and human interaction., (© 2019 John Wiley & Sons Ltd.)

Background: Communicating with patients about their prognosis and goals of care, including offering opportunities to engage in advance care planning (ACP) is widely recognised as best practice. Little is known about terminally ill patients' perceptions of communication and ACP practice following disclosure of their terminal prognosis., Objectives: To examine whether terminally ill patients with lung cancer and their relatives recall conversations with disclosing physicians, about their concerns, goals of care or any offers to engage in ACP., Methods: Qualitative study using semistructured interviews with patients and their family members. The study setting was a cancer centre and cancer unit in northern England., Results: 25 patients with advanced lung cancer (18 men and 7 women, aged 47-85) and 19 family members, mainly from lower social economic classes, took part in the study. Participants had little or no recall of physicians initiating discussions about their concerns, or goals of care and did not perceive that they had been provided with either information about or opportunities to engage in ACP. Some participants reported a sense of abandonment following the disclosure of a terminal prognosis. This sense was compounded by a range of difficult emotional experiences following the disclosure., Conclusions: It may be inappropriate to initiate discussions about end-of-life care planning immediately following the disclosure of a terminal prognosis. To avoid patients feeling abandoned physicians need to consider how they or another appropriate person can provide information and opportunities for terminally ill patients to engage in a process of ACP., Trial Registration Number: 06/Q2307/22., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.)

The relationships between caregiver burden as measured with the Burden Scale for Family Caregivers-short form and 6 characteristics of caregivers caring for patients with dementia were investigated for caregivers from England (n = 36), Finland (n = 42), and Greece (n = 46) using survey data. In all 3 countries, caregiver burden increases with physical problems of the caregiver, emotional problems of the caregiver, and weekly hours of care. Hence, in all 3 countries, special support for informal care is required when these characteristics are at high levels. When the caregiver is a spouse or long-term partner of the person with dementia, lives in the same house as this person, or spends fewer than 20 h/wk for other duties than care, this is associated with less caregiver burden in England but with more caregiver burden in Greece. Accordingly, special support is required for Greek caregivers with these characteristics, but the opposite is true for English caregivers.

Background: Integrated Care for dementia is an increasingly popular approach to supporting people with dementia, bringing services together to form a single cohesive provision for service users. This approach is still in its infancy but has the potential to improve the management of dementia, social care and to enhance the patient experience., Aims: To understand views and experiences of integrated health and social care for dementia from the perspective of carers, families, healthcare professionals and researchers., Methods: Crowdsourcing views and experiences from 'Bridging the Dementia Divide', a massive open online course at the University of Derby, provide a rich source of qualitative data from carers, families and healthcare professionals. We analysed 847 massive open online course discussion board posts using a Framework Analysis approach., Results: Participants described how Integrated Care for dementia should be person-centred and holistic, involving a multidisciplinary team of health and social care practitioners, as well as the patient, the family and the wider community. The establishment of Integrated Care for dementia was viewed positively.

A qualitative study using photo-elicitation was conducted to investigate the experiences of family members attending a residential burn camp. Six families were provided with cameras and asked to take photographs of their time at camp. They were subsequently interviewed about their experiences of camp, using their photographs as prompts. Thematic analysis of interview transcripts identified three main themes: benefits for the family as a whole (new activities and experiences and lasting impacts), benefits for the child (having fun without feeling different), and benefits for the parent/carer (support from those who understand). This is the first study to specifically investigate the experience of the whole family at a burn camp and suggests that attendance may offer a number of benefits for parents/carers and children. Photo-elicitation was an effective method for encouraging participants to recall and discuss their time at camp, and should be considered in future burns research.

Background: Despite the integral role that women play in the care of older adults in South Asian families, limited empirical data are available on the impact of migration from South Asia to England. The purpose of this research was to examine caring for a family member with dementia from a gender role perspective., Methods: Data were gathered in two phases: (1) focus groups and (2) semi-structured interviews. Focus groups were held with the general public, and semi-structured interviews were conducted with family carers. Data were audio-recorded and analysed using thematic analysis. The NVivo qualitative software was utilised to simplify the thematic analysis., Results: While traditionally family care for frail older adults has been mainly provided by women in South Asian families, the samples in this study revealed how women's attitudes towards caregiving are changing in British societies., Conclusion: There is a dearth of research about socioeconomic transformations in South Asian women's migration to Western countries that could contribute to deterring them from providing family care. More research is warranted to understand the ways in which migration shapes gender relations in South Asian families and its impact on care for the frail elderly., (© 2020 S. Karger AG, Basel.)

Aim: The aim of this study was to explore the experiences of patients and healthcare professionals regarding patients witnessing resuscitation on another patient in hospital clinical wards., Design: Phenomenological qualitative study., Methods: Participants will be recruited from nine wards in a university hospital in England. Data collection will include two in-depth interviews with patients who witnessed resuscitation: the first interview one week after witnessing resuscitation and the second interview after one month. Individual and focus group interviews with healthcare professionals will be also conducted. Data will be transcribed, managed in NVivo 11 and analysed using phenomenological analysis. The National Health Service, Health Research Authority and University Ethics Committee approved the study (May 2018). The study is funded by Resuscitation Council UK (December 2017) and will be conducted between May 2018-March 2019., Conclusion: While witnessed resuscitation is a major topic of interest in nursing, specific research on the impact of patients who witness resuscitation on fellow patients is limited. This study will use qualitative methodology to inform the evidence base of a clinical problem with limited understanding. The findings of this study will contribute to the framework of witnessed resuscitation and to identifying the barriers and enablers towards a greater support of patients who witness resuscitation in hospital. This new acquired knowledge will be beneficial to the improvement of future nursing care., Impact: The evidence gained from this study can support the development and implementation of guidelines and inform hospital policies to support patients witnessing resuscitation to optimize the quality of nursing care provided., (© 2018 John Wiley & Sons Ltd.)

Background: Family carers provide vital support for patients towards end-of-life, but caregiving has considerable impact on carers' own health. The scale of this problem is unknown, as previous research has involved unrepresentative samples or failed to fully capture caregiving close to death., Aim: To quantify level of psychological morbidity and general health among a census sample of carers of people with cancer at end-of-life, compared to population reference data., Design: National 4-month post-bereavement postal census survey of family carers of people who died from cancer, retrospectively measuring carers' psychological health (General Health Questionnaire-12) and general health (EuroQoL EQ-Visual Analogue Scale) during the patient's last 3 months of life., Participants: N = 1504 (28.5%) of all 5271 people who registered the death of a relative from cancer in England during 2 weeks in 2015 compared with data from the Health Survey for England 2014 ( N = 6477-6790)., Results: Psychological morbidity at clinically significant levels (General Health Questionnaire-12 ⩾4) was substantially higher among carers than the general population (83% vs 15%), with prevalence five to seven times higher across all age groups. Overall, carers' general health scores were lower than population scores, median 75 (interquartile range, 50-80) versus 80 (interquartile range, 70-90), but differences were more marked at younger ages. Female carers had worse psychological morbidity and general health than male carers., Conclusion: Levels of psychological morbidity among family carers during end-of-life caregiving are far higher than indicated by previous research, indicating a substantial public health problem. Consistent assessment and support for carers to prevent breakdown in caregiving may produce cost savings in long term.

Objective: To determine how to improve the cultural appropriateness and acceptability of an extant evidence-based model of family intervention (FI), a form of 'talking treatment,' for use with African Caribbean service users diagnosed with schizophrenia and their families., Design: Community partnered participatory research (CPPR) using four focus groups comprising 31 key stakeholders., Setting: Community locations and National Health Service (NHS) mental health care settings in northwest England, UK., Participants: African Caribbean service users (n=10), family members, caregivers and advocates (n=14) and health care professionals (n=7)., Results: According to participants, components of the extant model of FI were valid but required additional items (such as racism and discrimination and different models of mental health and illness) to improve cultural appropriateness. Additionally, emphasis was placed on developing a new ethos of delivery, which participants called 'shared learning.' This approach explicitly acknowledges that power imbalances are likely to be magnified where delivery of interventions involves White therapists and Black clients. In this context, therapists' cultural competence was regarded as fundamental for successful therapeutic engagement and outcomes., Conclusions: Despite being labelled 'hard-to-reach' by mainstream mental health services and under-represented in research, our experience suggests that, given the opportunity, members of the African Caribbean community were highly motivated to engage in all aspects of research. Participating in research related to schizophrenia, a highly stigmatized condition, suggests CPPR approaches might prove fruitful in developing interventions to address other health conditions that disproportionately affect members of this community., Competing Interests: Competing Interests: None declared.

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., (© 2018 The British Psychological Society.)

Background: There is little evidence documenting the attitudes, experiences, and behavioural factors of high-risk patients who are associated with avoiding hospital., Aim: To explore the health, healthcare management, and behavioural factors that contribute to enabling high-risk patients to avoid unplanned hospital admissions., Design and Setting: This was an in-depth qualitative, primary care, interview study with patients who were registered on the Northumberland High Risk Patient Programme (NHRPP) in Northumberland, UK., Method: There were 30 participants in this study, of who 21 were high-risk patients and nine were carers, spouses, or relatives. A grounded-theory approach was used to explore themes that emerged from the semi-structured interviews., Results: Participants described physical enablers that helped them to avoid hospital including medication, living aids, and resting; however, the benefit of these may be challenged by patient decision making. The strategies that patients used to cope with their health conditions included acceptance, positive reinterpretation, and growth. Participants felt that support networks of family and friends helped them to avoid hospital, although the strain on the spouse should be considered. The majority of patients described having trust and confidence in their healthcare providers, and continuity of care was important to patients., Conclusion: Reinforcing the importance of the physical enablers, as well as support networks to patients, carers, and healthcare providers, could help patients to avoid hospital. Highlighting the coping strategies that patients use may help patients to manage their health, while promoting continuity of care will also contribute to helping high-risk patients to avoid unplanned hospital admissions., (© British Journal of General Practice 2018.)

Background: Little is known about the role of living circumstances to the perception of subjective well-being (SWB) and health of adults with intellectual disability (ID). The aim of the present study was to examine whether living circumstances impact differently on the perception of health and SWB and whether potential differences persist after accounting for other variables (e.g. level of support needs and reporting method)., Methods: Secondary data analysis was undertaken of a large national survey of adults with an ID in England, aged 16 years and over. Participants were identified as living with family (N = 1528) or living out of home (N = 874)., Results: The results of t-test and chi-square revealed that levels of health and SWB were perceived as being higher for people living with family than those living in out-of-home settings. Multiple linear regression analyses fitted to explore factors associated with these reported differences revealed that, when controlling for other variables, living with family was highly associated with reports of better SWB. Multiple logistic regression revealed that whilst the health status of people living with families were perceived as better, this was only true when their support needs were low. Poorest health outcomes were found for people with highest support needs who lived with family., Conclusions: On the whole, the health and well-being of adults living with family were perceived more positively than those living out of home. However, potential health disparities exist for those with high support needs who live with family. Further longitudinal research is needed to explore causes and potential solution to these inequalities., (© 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and John Wiley & Sons Ltd.)

Although under-researched and under-theorized compared to other settings, there is potential for the family setting to be harnessed to support the development of healthy children and societies and to reduce health inequalities. Within this setting, the role of fathers as health facilitators has yet to be fully understood and considered within health promotion. This paper draws on a two year evaluation of a community embedded intervention for fathers and children in an area of multiple deprivation in North West England. The evaluation integrated a variety of qualitative methods within a participatory evaluation framework to help understand the development and impact of a programme of work co-created by a social enterprise and fathers from within the community. Findings suggest that allowing fathers to define their own concerns, discover solutions to these and design locally appropriate ways to share these solutions can result in significant change for them, their children and the wider community. The key to this process is the provision of alternative spaces where fathers feel safe to share the substantial difficulties they are experiencing. This improved their confidence and had a positive impact on their relationships with their children and with significant others around them. However, this process required patience, and a commitment to trusting that communities of men can co-create their own solutions and generate sustainable success. We suggest that commissioning of services delivered 'to' people could be replaced, or supplemented, by commissioning appropriate organisations to work with communities to co-create solutions to the needs they themselves have recognized.

Mild frailty is common in later life, increasing the risk of hospitalisation, loss of independence and premature death. Targeted health promotion services may reduce adverse outcomes and increase quality of life; however, effective, well-developed theory-based interventions are lacking. We aimed to explore perceptions of health promotion behaviours undertaken by older people with mild frailty, barriers and facilitators to engagement, and identify potential components for new home-based health promotion services. We carried out 17 semi-structured qualitative interviews and six focus groups with 53 stakeholders, including 14 mildly frail older people, 12 family carers, 19 community health and social care professionals, and 8 homecare workers, in one urban and one semi-rural area of England. Transcripts were thematically analysed. Older people with mild frailty reported engaging in a variety of lifestyle behaviours to promote health and well-being. Key barriers or facilitators to engaging in these included transport, knowledge of local services, social support and acceptance of personal limitations. Older people, carers and professionals agreed that any new service should address social networks and mobility and tailor other content to each individual. Services should aim to increase motivation through focussing on independence and facilitate older people to continue carrying out behaviours that improve their well-being, as well as provide information, motivation, psychological support and practical support. Stakeholders agreed services should be delivered over a sustained period by trained non-specialist workers. New services including these components are likely to be acceptable to older people with mild frailty., (© 2017 The Authors. Health and Social Care in the Community Published by John Wiley & Sons Ltd.)

Background: Family carers of patients with advanced cancer living at home have an important role in providing the patient's food and drink. Little attention has been paid to the support needs, particularly of the nutrition needs, of family carers., Objective: The aim of this study was to report support needs of family carers of patients with advanced cancer and eating problems., Methods: The research is an inductive secondary analysis of baseline interview data from an exploratory trial conducted in the south of England. The interviews explored the management of eating problems in the home. A sample of 31 patients was selected where the patient's partner/spouse had also agreed to take part in the primary study., Results: The analysis and interpretation reveal family carers to have a nourishing role, which is taken for granted by the patient and the carer themselves. This role is typically seen as an extension of the normal role of wife, mother, or homemaker in the family and no more than what a family carer should do. This obscures a need for information and advice on the nutritional care of patients with cancer with fickle appetite and other eating problems that are difficult to manage. Family carers may also be at a nutritional risk because their own dietary intake was found to mirror the patient's with some of them losing weight., Conclusions: Family cancer carers have a nourishing role that requires knowledge and skill beyond the everyday., Implications for Practice: Cancer carers need education in how best to provide nutritional care. They also need support in managing their own nutritional risk.

Background: In recent years, UK policy has increasingly recognised the importance of end-of-life care in dementia. While professional consensus on optimal palliative care in dementia has been reported, little is known about the perspectives of people with dementia and family carers., Aim: To compare the views of people with dementia and family carers of people with dementia (current and recently bereaved) on optimal end-of-life care., Design: Qualitative interviews (32) and a focus group were conducted. Data were thematically analysed., Setting/participants: Participants comprised people with early stage dementia, living at home in the north-east of England ( n = 11); and current and bereaved carers ( n = 25) from six services providing end-of-life care in England., Findings: Seven areas were identified as important to end-of-life care for people with dementia and/or family carers. People with dementia and carers expressed the need for receiving care in place, ensuring comfort and a skilled care team. However, they disagreed about the importance of planning for the future and the role of families in organising care and future decision-making., Conclusion: Further comparison of our findings with expert consensus views highlighted key areas of divergence and agreement. Discordant views concerning perceptions of dementia as a palliative condition, responsibility for future decision-making and the practical co-ordination of end-of-life care may undermine the provision of optimal palliative care. Professionals must explore and recognise the individual perspectives of people with dementia and family carers.

Background: Adolescent antisocial behaviour is a major health and social problem. Studies in the USA have shown that multisystemic therapy reduces such behaviour and the number of criminal offences committed by this group. However, findings outside the USA are equivocal. We aimed to assess the effectiveness and cost-effectiveness of multisystemic therapy versus management as usual in the treatment of adolescent antisocial behaviour., Methods: We did an 18 month, multisite, pragmatic, randomised controlled, superiority trial in England. Eligible participants aged 11-17 years with moderate-to-severe antisocial behaviour had at least three severity criteria indicating past difficulties across several settings and one of five general inclusion criteria for antisocial behaviour. We randomly assigned families (1:1) using stochastic minimisation, stratifying for treatment centre, sex, age at enrolment to study, and age at onset of antisocial behaviour, to receive either management as usual or 3-5 months of multisystemic therapy followed by management as usual. Research assistants and investigators were masked to treatment allocation; the participants could not be masked. The primary outcome was out-of-home placement at 18 months. The primary analysis included all randomised participants for whom data were available. This trial is registered, number ISRCTN77132214. Follow-up of the trial is still ongoing., Findings: Between Feb 4, 2010, and Sept 1, 2012, 1076 families were referred to nine multi-agency panels, 684 of whom were assigned to management as usual (n=342) or multisystemic therapy followed by management as usual (n=342). At 18 months, the proportion of participants in out-of-home placement was not significantly different between the groups (13% [43/340] in the multisystemic therapy group vs 11% [36/335] in the management-as-usual group; odds ratio 1·25, 95% CI 0·77-2·05; p=0·37)., Interpretation: The findings do not support that multisystemic therapy should be used over management as usual as the intervention of choice for adolescents with moderate-to-severe antisocial behaviour., Funding: Department for Children, Schools and Families, Department of Health., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

Background: Recruitment and retention of participants is crucial for statistical power and internal and external validity and participant engagement is essential for behaviour change. However, many school-based interventions focus on programme content rather than the building of supportive relationships with all participants and tend to employ specific standalone strategies, such as incentives, to improve retention. We believe that actively involving stakeholders in both intervention and trial design improves recruitment and retention and increases the chances of creating an effective intervention., Methods: The Healthy Lifestyles Programme, HeLP (an obesity prevention programme for children 9-10 years old) was developed using intervention mapping and involved extensive stakeholder involvement in both the design of the trial and the intervention to ensure that: (i) delivery methods were suitably engaging, (ii) deliverers had the necessary skills and qualities to build relationships and (iii) the intervention dovetailed with the National Curriculum. HeLP was a year-long intervention consisting of 4 multi-component phases using a range of delivery methods. We recruited 1324 children from 32 schools from the South West of England to a cluster-randomised controlled trial to determine the effectiveness of HeLP in preventing obesity. The primary outcome was change in body mass index standard deviation score (BMI SDS) at 24 months post randomisation. Secondary outcomes included additional anthropometric and behavioural (physical activity and diet) measures at 18 and 24 months., Results: Anthropometric and behavioural measures were taken in 99%, 96% and 94% of children at baseline, 18 and 24 months, respectively, with no differential follow up between the control and intervention groups at each time point. All children participated in the programme and 92% of children and 77% of parents across the socio-economic spectrum were considered to have actively engaged with HeLP., Conclusions: We attribute our excellent retention and engagement results to the high level of stakeholder involvement in both trial and intervention design, the building of relationships using appropriate personnel and creative delivery methods that are accessible to children and their families across the social spectrum., Trial Registration: International Standard Randomised Controlled Trials Register, ISRCTN15811706 . Registered on 1 May 2012.

Following legal improvements made around mental capacity together with the Health and Social Care Act, it is now possible for a direct payment to be paid to a 'Suitable Person' to manage on someone's behalf to purchase directly care and support services. People with dementia are a key group affected by this change in England of adult social care. We interviewed nine social care practitioners and seven Suitable People for people with dementia across five English local authorities to begin to examine their experiences of this new method of social care provision. Findings from thematic analyses suggest positive outcomes and multiple beneficiaries, but some challenges: potentially inappropriate processes, support planning, divergence in attitudes towards care and support outcomes. Implications for practice include obfuscation of recipients' and Suitable People's best interests and supporting practitioners to explore fully clients' aspirations for care and support., (© The Author(s) 2014.)

Withdrawal of artificially delivered nutrition and hydration (ANH) from patients in a permanent vegetative state (PVS) requires judicial approval in England and Wales, even when families and healthcare professionals agree that withdrawal is in the patient's best interests. Part of the rationale underpinning the original recommendation for such court approval was the reassurance of patients' families, but there has been no research as to whether or not family members are reassured by the requirement for court proceedings or how they experience the process. The research reported here draws on in-depth narrative interviews with 10 family members (from five different families) of PVS patients who have been the subject of court proceedings for ANH-withdrawal. We analyse the empirical evidence to understand how family members perceive and experience the process of applying to the courts for ANH-withdrawal and consider the ethical and practice implications of our findings. Our analysis of family experience supports arguments grounded in economic and legal analysis that court approval should no longer be required. We conclude with some suggestions for how we might develop other more efficient, just and humane mechanisms for reviewing best interests decisions about ANH-withdrawal from these patients., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Objectives: Around 1% of patients who have a hip replacement have deep prosthetic joint infection (PJI) afterwards. PJI is often treated with antibiotics plus a single revision operation (1-stage revision), or antibiotics plus a 2-stage revision process involving more than 1 operation. This study aimed to characterise the impact and experience of PJI and treatment on patients, including comparison of 1-stage with 2-stage revision treatment., Design: Qualitative semistructured interviews with patients who had undergone surgical revision treatment for PJI. Patients were interviewed between 2 weeks and 12 months postdischarge. Data were audio-recorded, transcribed, anonymised and analysed using a thematic approach, with 20% of transcripts double-coded., Setting: Patients from 5 National Health Service (NHS) orthopaedic departments treating PJI in England and Wales were interviewed in their homes (n=18) or at hospital (n=1)., Participants: 19 patients participated (12 men, 7 women, age range 56-88 years, mean age 73.2 years)., Results: Participants reported receiving between 1 and 15 revision operations after their primary joint replacement. Analysis indicated that participants made sense of their experience through reference to 3 key phases: the period of symptom onset, the treatment period and protracted recovery after treatment. By conceptualising their experience in this way, and through themes that emerged in these periods, they conveyed the ordeal that PJI represented. Finally, in light of the challenges of PJI, they described the need for support in all of these phases. 2-stage revision had greater impact on participants' mobility, and further burdens associated with additional complications., Conclusions: Deep PJI impacted on all aspects of patients' lives. 2-stage revision had greater impact than 1-stage revision on participants' well-being because the time in between revision procedures meant long periods of immobility and related psychological distress. Participants expressed a need for more psychological and rehabilitative support during treatment and long-term recovery., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Objectives: The multifaceted nature of the problems faced by someone with motor neuron disease requires a knowledgeable multidisciplinary team approach. Where available, generally, such services are only provided on an outpatient basis, meaning that hospitalised patients are frequently admitted to non-specialist wards where understanding of their needs is limited. Little is known regarding the inpatient care received by patients. Our objective was to address this by exploring the experience of hospitalisation following a diagnosis of motor neuron disease from the perspective of family carers of those diagnosed with the illness., Method: This was a qualitative secondary analysis of pre-existing data from two previously published, separately conducted, qualitative studies. The study involved interview data from 18 bereaved carers and 3 current carers of family members diagnosed with motor neuron disease in Northwest England., Results: The findings reveal dissatisfaction with the inpatient care received, which impacted negatively not only on patient and carer enthusiasm for future hospital admissions but also on carer bereavement., Conclusions: Patients with motor neuron disease have specialist needs that are not always met during hospital admission, particularly to non-specialist units. The inpatient care provided for these patients must be improved as must the knowledge and understanding of the illness among healthcare professionals who treat them., (Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/)

Background: Recruitment to trials evaluating the effectiveness of childhood obesity management interventions is challenging. We report our experience of recruitment to the Families for Health study, a randomised controlled trial evaluating the effectiveness of a family-based community programme for children aged 6-11 years, versus usual care. We evaluated the effectiveness of active recruitment (contacting eligible families directly) versus passive recruitment (informing the community through flyers, public events, media)., Methods: Initial approaches included passive recruitment via the media (newspapers and radio) and two active recruitment methods: National Child Measurement Programme (letters to families with overweight children) and referrals from health-care professionals. With slow initial recruitment, further strategies were employed, including active (e.g. targeted letters from general practices) and passive (e.g. flyers, posters and public events) methods. At first enquiry from a potential participant, families were asked where they heard about the study. Further quantitative (questionnaire) and qualitative data (one-to-one interviews with parents/carers), were collected from recruited families at baseline and 3-month follow-up and included questions about recruitment., Results: In total, 194 families enquired about Families for Health, and 115 (59.3 %) were recruited and randomised. Active recruitment yielded 85 enquiries, with 43 families recruited (50.6 %); passive recruitment yielded 99 enquiries with 72 families recruited (72.7 %). Information seen at schools or GP surgeries accounted for over a quarter of enquiries (28.4 %) and over a third (37.4 %) of final recruitment. Eight out of ten families who enquired this way were recruited. Media-led enquiries were low (5 %), but all were recruited. Children of families recruited actively were more likely to be Asian or mixed race. Despite extensive recruitment methods, the trial did not recruit as planned, and was awarded a no-cost extension to complete the 12-month follow-up., Conclusions: The higher number of participants recruited through passive methods may be due to the large number of potential participants these methods reached and because participants may see the information more than once. Recruiting to a child obesity treatment study is complex and it is advisable to use multiple recruitment strategies, some aiming at blanket coverage and some targeted at families with children who are overweight., Trial Registration: Current Controlled Trials ISRCTN45032201 (Date: 18 August 2011).

Background: The way that people die is particularly important to those who are left behind and this memory is not limited to the moment of death, but encompasses the entire end-of-life phase. While a number of attributes for a 'good death' have been identified, less is known about how care providers feature within these conceptualisations., Aim: The aim of this article is to describe the end-of-life experience from the point of view of bereaved family carers with particular reference to the role that care providers play in shaping this experience., Design: Qualitative interviews carried out as part of a study to evaluate a new rapid response hospice at home service. An interpretive thematic analysis using the Framework approach was used to examine how family carers judge a 'good death' and how care providers feature in the attributes of a 'good death'., Participants and Setting: A total of 44 interviews with bereaved family carers from a hospice population in the South East of England., Results: Six themes were identified as attributes of a good death in which care providers had a key role: social engagement and connection to identity, care provider characteristics and actions, carer's confidence and ability to care, preparation and awareness of death, presentation of the patient at death and support after death for protected grieving., Conclusion: Care providers played a much wider role in social aspects of care at the end of life than previously considered., (© The Author(s) 2015.)

Background: The need for pre-bereavement support for children facing the death of a parent is well recognised but how this is done by hospice ward nurses in practice is not well known., Method: To explore the experiences of hospice ward nurses' identification of the support needs of children under 18 years old facing the death of a parent, and the impact on hospice nurses when involved in providing this support., Design: Semi-structured individual interviews with hospice nurses working on a single UK inpatient unit were audio-taped and analysed using thematic analysis to produce themes and subthemes., Results: Nurses were highly reflective, discussing their personal experiences, and identified potential enablers and barriers to providing support. Child and family factors were identified as influencing identification of support needs., Conclusion: Multiple factors influencing provision of support emerged. Formal training and readily available resources would support hospice nurses working with children.

Background: There is an increasing international policy direction to promote home death for dying patients which will impact on the demands placed on family carers. The early identification of carer needs and appropriate intervention can help avoid crisis situations for the carer and avoidable hospital admissions which are reported to be a global concern. The aim of the study was to explore what professionals and carers of patients with cancer and advanced progressive illness, in their last year of life, find burdensome and to develop an alert system for use by non-specialist staff., Methods: A mixed-method, multi-phased, consensus study sequentially utilising qualitative and quantitative data to develop and pilot the Carers' Alert Thermometer (CAT). 245 people (117 carers and 128 professionals) participated in the study across a range of health and social care settings in the North West of England (2011-2014)., Results: A number of key domains were identified and prioritised by consensus for inclusion in the CAT. The 8 domains fit within two overarching themes of the reported carer experience; the support needed by the carer to provide care and the support needed for the carer's own health and well-being. The resultant CAT is an evidence-based alert thermometer consisting of 10 questions, guidance on the possible actions for each alert and space for an action plan to be jointly agreed by the assessor and carer. Preliminary piloting of the CAT has shown it to be valued, fit for purpose and it can be administered by a range of personnel., Conclusions: The CAT enables the identification of current and potential future needs so a proactive approach can be taken to supporting the carer as their role develops over time, with a view to enhancing their well-being and preventing avoidable hospital admissions; ultimately supporting patient choice to remain in their own home.

Objectives: To identify patient and caregiver characteristics associated with caregiver dissatisfaction with hospital care of cognitively impaired elderly adults., Design: Secondary analysis of data from a randomized controlled trial., Setting: An 1,800-bed general hospital in England providing the only emergency medical services in its area., Participants: Cognitively impaired individuals aged 65 and older randomly assigned to a specialist unit or standard geriatric or internal medical wards (N = 600) and related caregivers (N = 488)., Measurements: Patient and caregiver health status was measured at baseline, including delirium, cognitive impairment, behavioral and psychological symptoms, activities of daily living, and caregiver strain. Caregiver satisfaction with quality of care was ascertained after hospital discharge or death., Results: Four hundred sixty-two caregivers completed satisfaction questionnaires. Regardless of assignment, 54% of caregivers were dissatisfied with some aspects of care, but overall 87% were satisfied with care. The main areas of dissatisfaction were communication, discharge planning, and medical management. Dissatisfaction was associated with high levels of patient behavioral and psychological symptoms on admission, caregiver strain and poor psychological well-being at admission, a diagnosis of delirium, and the relationship between the caregiver and the patient. There was less dissatisfaction from caregivers of patients managed on the specialist Medical and Mental Health Unit than those on standard wards, after controlling for multiple factors., Conclusion: Dissatisfaction was associated with patient behavioral and psychological symptoms and caregiver strain but was not immutable to efforts to improve care., (© 2014, Copyright the Authors Journal compilation © 2014, The American Geriatrics Society.)

Background: Bereavement is a major life event often leading to psychiatric morbidity. Provision of bereavement care is poorly established in general hospital settings., Objective: We describe a novel bereavement service in a large secondary care institution and assess its impact., Design and Measurements: In this descriptive study, data from the first year of operation of the service was obtained. The questions from interviews with relatives stemming from the bereavement care service were reviewed and categorized. Potential predictors of requesting a follow-up meeting were analyzed., Results: Of the 1384 bereaved relatives who were written to, 142 requested follow-up and 119 (8.6%) culminated in a bereavement follow-up meeting. The most common questions asked were for further details regarding the diagnosis (29%), why the patient had deteriorated so quickly (28%), what the diagnosis was (24%), and the sequence of events (24%). Relatives of younger patients and those from specialties other than medicine or surgery were more likely to seek bereavement follow-up (p<0.01 in each case)., Conclusion: A specialized bereavement service is feasible in a large hospital trust and allows follow-up of relatives with ongoing questions and concerns, with the opportunity of reducing severe grief reactions.