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Background. Cancer diagnosis is a complex and multifaceted process that can be stressful and anxiety-provoking for patients. Evidence-based tools and information aids that can be used for guiding and supporting patients during cancer investigations and after diagnosis are limited. This paper presents a user-centred codesign project that aims to develop a cancer pathway support tool for patients, carers, and healthcare professionals. Method. A mixed-method codesign approach was used including prototype development (January–March 2022), three online codesign workshops (April–June 2022), one-to-one feedback, and beta testing informed by the standardised Theoretical Framework of Acceptability (TFA) questionnaire (July–October 2022). Nine individuals with lived experience of cancer contributed to the project and are referred to as codesigners. Results. The codesigners valued the potential importance of a tool that can be used by the patients and carers if they want specific information about cancer investigations, diagnosis, and treatment. The ability to select what they need as opposed to long leaflets and generating their own questions for the healthcare providers were highlighted as important aspects of improving patient care. The tool was collectively designed to provide clear definitions of the cancer care pathway and easily accessible links from trusted resources and includes practical information to minimise the burden that can be experienced from preparation for appointments and tests. Beta testing results with a small sample of potential users including patients, carers, and healthcare providers (n = 23) showed high acceptability of the guide (range = 7–35, mean = 28.52, and standard deviation = 3.88) based on the TFA questionnaire. Conclusion. A cancer pathway support tool called "Your Cancer Pathway Support Guide (YCPSG)" was developed as a result of an iterative codesign process aiming to improve patient experience and outcomes for people referred on a suspected cancer pathway or who have been diagnosed with cancer. The tool provides information and support in both digital and PDF formats. Further studies are needed to evaluate the potential impact of "Your Cancer Pathway Support Guide" on patient outcomes and experience and the wider system. [ABSTRACT FROM AUTHOR]

This paper investigates the relationship between social participation and subjective health. Using individual‐level data from the British Household Panel Survey, we show that being an active member of a social or sport organisation increases self‐rated physical and psychological health. For men, the benefits of social interaction work primarily via physical pathways, while women report a more psychosocial channel. We separate the main results by occupation and document some heterogeneity. Manual workers find more physical and psychological relief via social involvement, whereas non‐manual workers are more likely to take relief from sport participation. Interestingly, as the number of associations in which the individual is active increases, the incremental increase in social benefits diminishes. Our findings point to the importance of promoting social and sport activities in health communication and policy making. [ABSTRACT FROM AUTHOR]

Following the outbreak of the COVID-19 pandemic, public-health measures introduced to stem the spread of the disease caused profound changes to patterns of daily-life communication. This paper presents the results of an online survey conducted to document adult cochlear-implant (CI) users' perceived listening difficulties under four communication scenarios commonly experienced during the pandemic, specifically when talking: with someone wearing a facemask, under social/physical distancing guidelines, via telephone, and via video call. Results from ninety-four respondents indicated that people considered their in-person listening experiences in some common everyday scenarios to have been significantly worsened by the introduction of mask-wearing and physical distancing. Participants reported experiencing an array of listening difficulties, including reduced speech intelligibility and increased listening effort, which resulted in many people actively avoiding certain communication scenarios at least some of the time. Participants also found listening effortful during remote communication, which became rapidly more prevalent following the outbreak of the pandemic. Potential solutions identified by participants to ease the burden of everyday listening with a CI may have applicability beyond the context of the COVID-19 pandemic. Specifically, the results emphasized the importance of visual cues, including lipreading and live speech-to-text transcriptions, to improve in-person and remote communication for people with a CI. [ABSTRACT FROM AUTHOR]

This study explores the impact of mental capacity in relation to breast screening for women with intellectual disabilities in the UK. Participation in breast screening is considerably lower for women with intellectual disabilities compared to the general population. Barriers to screening include poor mobility and behavioural difficulties. There is currently no research which primarily explores the relationship between mental capacity and breast screening for this group of individuals. This paper presents the results of a cross‐sectional survey of 131 women with intellectual disabilities supported by eight Social Care Providers within England and Wales. The data were collected between January 2017 and July 2017. The current research explores the decision‐making process surrounding breast screening, considering the impact of associated risk factors during this process. Participants completed a specifically created survey addressing the aforementioned issues. The results indicated that women who lacked capacity, were less likely to engage in breast screening. It was also demonstrated that the process outlined in the Mental Capacity Act (MCA; 2005) was not always followed; women were not routinely assessed if there were doubts regarding their decision‐making ability around breast screening and best interest meetings (BIM) were not always held if the person lacked capacity. In order to be able to generalise the current findings, further research is needed to gain a broader understanding of how professionals make decisions around breast screening for women with intellectual disabilities in case the individuals are unable to decide this independently. [ABSTRACT FROM AUTHOR]

Growing evidence of the association between health professionals' well‐being and patient and organisational outcomes points to the need for effective staff support. This paper reports a brief survey of the UK's children's cancer Principal Treatment Centres (PTCs) regarding staff support systems and practices. A short on‐line questionnaire, administered in 2012–2013, collected information about the availability of staff support interventions which seek to prevent work‐related stress among different members of the multi‐disciplinary team (MDT). It was completed by a member of staff with, where required, assistance from colleagues. All PTCs (n = 19) participated. Debriefs following a patient death was the most frequently reported staff support practice. Support groups were infrequently mentioned. There was wide variability between PTCs, and between professional groups, regarding the number and type of interventions available. Doctors appear to be least likely to have access to support. A few Centres routinely addressed work‐related stress in wider staff management strategies. Two Centres had developed a bespoke intervention. Very few Centres were reported to actively raise awareness of support available from their hospital's Occupational Health department. A minority of PTCs had expert input regarding staff support from clinical psychology/liaison psychiatry. [ABSTRACT FROM AUTHOR]

Current demographic, policy and management changes are a challenge to hospices to develop their volunteering practices. The study upon which this paper is based aimed to explore good practice in volunteer involvement and identify ways of improving care through developing volunteering. The project consisted of a narrative literature review; a survey of volunteer managers; and organisational case studies selected through purposive diversity sampling criteria. A total of 205 staff, volunteers, patients and relatives were interviewed across 11 sites in England in 2012. This article focuses on one of the findings - the place that volunteers occupy between the hospice and the community beyond its walls. External changes and pressures in society were impacting on volunteer management, but were viewed as requiring a careful balancing act to retain the 'spirit' of the hospice philosophy. Honouring the developmental history of the hospice was vital to many respondents, but viewed less positively by those who wished to modernise. Hospices tend to be somewhat secluded organisations in Britain, and external links and networks were mostly within the end-of-life care arena, with few referring to the wider volunteering and community fields. Volunteers were seen as an informal and symbolic 'link' to the local community, both in terms of their 'normalising' roles in the hospice and as providing a two-way flow of information with the external environment where knowledge of hospice activities remains poor. The diversity of the community is not fully represented among hospice volunteers. A few hospices had deliberately tried to forge stronger interfaces with their localities, but these ventures were often controversial. The evidence suggests that there is substantial scope for hospices to develop the strategic aspects of volunteering through greater community engagement and involvement and by increasing diversity and exploiting volunteers' 'boundary' position more systematically to educate, recruit and raise awareness. [ABSTRACT FROM AUTHOR]

Shared Lives (adult placement) is a model of community-based support where an adult who needs support and/or accommodation moves into or regularly visits the home of an approved Shared Lives carer, after they have been matched for compatibility. It is an established but small service which has been used mainly by people with learning disabilities but which has the potential to offer an alternative to traditional services for some older people. However, there is little research on the outcomes for older users of Shared Lives. This paper presents findings from a survey of 150 older people using Shared Lives support across 10 Shared Lives schemes in England, which took place between June 2013 and January 2014. The aim was to identify outcomes for older users of Shared Lives and compare these to outcomes for older users of other social care services. In the absence of an ideal study design involving randomised allocation, statistical matching was used to generate a comparison group from the Adult Social Care Survey from 2011/12, with 121 cases matched to 121 Shared Lives cases. The main outcome measures were Social Care-Related Quality of Life (measured by the ASCOT) and overall quality of life. Findings indicated that Shared Lives can deliver good outcomes for older people, particularly for overall quality of life. In comparison to the matched group of older people using other forms of support, there was some evidence that Shared Lives may deliver better outcomes in some aspects of quality of life. Limitations to the research mean, however, that more work is needed to fully understand the role Shared Lives could play in supporting older people. [ABSTRACT FROM AUTHOR]

This paper is based on data collected in 2009 for the international Stigma Index Study which measured the experiences of stigma among participants living with HIV in the UK. Data were collected using a self-completed survey questionnaire and focus group discussions. Quantitative data were analysed using SPSS, while qualitative data were subjected to thematic analysis. The Stigma Index attempts to establish a baseline for documenting the experience of stigma and discrimination by people living with HIV while also acting as an advocacy tool whose power lay in the involvement of people living with HIV in the design of study instruments and data collection. Participants were recruited through collaborations with a broad range of UK HIV support organisations. The ethics protocols used were those described in the Stigma Index guidebook. A total of 867 people living with HIV took part, of whom 276 described themselves as 'immigrants'. Most of this 'migrant' subsample (70%) was women. Nearly, all (91%) identified as heterosexual, while 9% were attracted to someone of the same sex as them. Socioeconomic deprivation was a key theme and they reported other stigmatised chronic conditions in addition to HIV. It is not possible to ascertain from the questionnaire, the migrants' countries of origin and length of stay in the UK. Control of information about HIV was critically managed, with respect to family and partners. Felt stigma increased anxieties about personal safety, particularly among men. Strategies for safeguarding against the negative impact of stigma included avoiding social gatherings, intimacy, and clinical and HIV social care settings. Most participants were unaware of policies and declarations that protected them as persons living with HIV. Specific recommendations include creating awareness about rights as enshrined in various legal frameworks that protect the right of people living with HIV, which has been reconfigured as a 'disability'. [ABSTRACT FROM AUTHOR]

Psychosocial distress and poorer quality of life after renal transplantation are common in children and young people. This has implications for medication adherence and survival. Posttransplant psychology annual reviews were introduced in one Paediatric Renal Service in the UK as a means of measuring psychological distress and quality of life, as well as facilitating identification of patients and parents/carers who would benefit from psychological intervention. The process of completing posttransplant psychology annual reviews is discussed within this paper. The posttransplant psychology annual review appointments identified patients experiencing depression and/or anxiety and problems in quality of life. These assessments have led to appropriate referrals to, and engagement with, the renal psychology service as well as with community tier 3 child and adolescent mental health services. The posttransplant psychology annual review will continue to be completed at this UK site and discussions will be undertaken with other paediatric renal transplant services to consider whether these could be introduced at a national level to facilitate collection of longitudinal data regarding long-term psychosocial impact of paediatric renal transplantation and its effect on quality of life. [ABSTRACT FROM AUTHOR]

United Kingdom policy and practice endorses family support for child well-being. Achieving such support requires multi-agency approaches that consider all aspects of parents' and children's lives and which offer practical, social and emotional help. The potential for services to make a positive impact on parents and their families will depend in part on the level and nature of engagement. In this paper, a case is made for the application of the two-part surface and depth concept for understanding how practitioners engage with families and how they might improve the chances of supporting sustainable differences for parents and families. To illustrate, qualitative data from a review of family centre support provided by a north of England local authority are presented. The review was commissioned to explore why families often need to re-engage with intensive support services. Data were drawn from interviews with parents (n = 18, recruited following a survey of all those registered with the service during April-May 2009) and discussions with family centre support workers (n = 4), and following thematic analysis, three dominant themes emerged -- resources available, staff approach and real life--which were appraised in the light of the surface and depth concept. Much of the work with parents effectively dealt with pressing needs. This felt gratifying for both parent and worker and supported immediate service engagement. However, each noted that the more complex issues in parents' lives went unchallenged and thus the sustainability of progress in terms of parenting practice was questionable. A strengths focused approach by staff that understood needs in the context of parents' real-life circumstances was important to parent engagement. Thus, longer term benefits from family support require practitioners to work with parents to problem solve immediate issues while also digging deeper to acknowledge and seek to resolve the more complex challenges parents face in their real lives. [ABSTRACT FROM AUTHOR]

Psychiatric morbidity has been shown to be associated with the increased reporting of a range of social problems involving legal rights ('rights problems'). Using a validated measure of psychiatric morbidity, this paper explores the relationship between psychiatric morbidity and rights problems and discusses the implications for the delivery of health and legal services. New representative national survey data from the English and Welsh Civil and Social Justice Survey (CSJS) surveyed 3040 adults in 2007 to explore the relationship between GHQ-12 scores and the self reported incidence of and behaviour surrounding, rights problems. It was found that the prevalence of rights problems increased with psychiatric morbidity, as did the experience of multiple problems. It was also found the likelihood of inaction in the face of problems increased with psychiatric morbidity, while the likelihood of choosing to resolve problems without help decreased. Where advice was obtained, psychiatric morbidity was associated with a greater tendency to obtain a combination of 'legal' and 'general' support, rather than 'legal' advice alone. The results suggest that integrated and 'outreach' services are of particular importance to the effective support of those facing mental illness. [ABSTRACT FROM AUTHOR]

Short breaks help maintain caring relationships, enabling people to remain living in their own homes and contributing significant economic benefit to public services. However, relatively little is known about the added social value generated by community-based short breaks. To address this evidence gap, we explored the feasibility of using a social return on investment (SROI) evaluation to explore a day support service in North Wales for people living with dementia and their unpaid carers. Following good practice for evaluating complex interventions, we developed a logic model based on the literature and interviews to understand the mechanisms and outcomes of the day support service. Using questionnaires, we quantified outcomes for the current service cohort, which included people living with dementia, unpaid carers, and paid companions. Seven people living with dementia, three unpaid carers, and four companions completed questionnaires. By following the SROI analysis approach, three key learning points were identified. The first was around ways to capture outcomes from all stakeholder subgroups expected to experience material change. The second concerned the importance of collecting longitudinal data. This included the need to consider how to adapt the SROI method to work with small populations. The third concerned how to value "maintenance" of wellbeing as well as improved wellbeing. [ABSTRACT FROM AUTHOR]

Child sleep is a common parental concern and there is an array of resources available to parents. However, an exploration of UK parents' help‐seeking behaviours around child sleep is lacking. This study sought to identify the resources parents use to seek information and help for child sleep, as well as to explore what factors parents prefer about certain sources and their reservations about using other resources. Parents of 6‐36 month old children residing in the United Kingdom (UK) completed an online questionnaire between October 2015 and October 2016 about their use, opinions and experiences regarding resources for child sleep. Quantitative data were descriptively analysed and thematic analysis was conducted on parents' open‐ended text responses. Participants were 266 UK parents (97% mothers). Parents' ages ranged from 21 to 45 years (M = 33.49 years, SD = 4.71) and all resided in the United Kingdom (UK). General Internet searches were the most commonly reported source used by 47% of parents with a range of other informal resources also frequently consulted. Health Visitors (HVs) were the most accessed healthcare professional reportedly consulted by 38% of parents. Seven themes represented parental preferences for their resource use. Most strongly endorsed included a desire for information from other parents, particularly those with practical experience and accessing information that aligned with their parenting values. Parents preferred sources that provided support and reassurance, as well as those that afforded parents the ability to select relevant elements from a range of information. Seven themes represented parents' reservations about resources. Most strongly endorsed were concerns about reliability, being judged and challenges associated with filtering vast amounts of information. Parents reported having reservations towards sources if they had a previous negative experience with the source. Possible implications of the findings and specific suggestions about how existing and future resources could be adapted to better meet parents' needs are highlighted. [ABSTRACT FROM AUTHOR]

Concern has been expressed about the extent to which people with disabilities may be particularly vulnerable to negative impacts of the 2020 COVID‐19 pandemic. However, to date little published research has attempted to characterise or quantify the risks faced by people with/without disabilities in relation to COVID‐19. We sought to compare the impact of the early stages of the COVID‐19 pandemic and associated government responses among working age adults with and without disabilities in the UK on; COVID‐19 outcomes, health and wellbeing, employment and financial security, health behaviours, and conflict and trust. We undertook secondary analysis of data collected in four UK longitudinal surveys; the Millennium Cohort Study, Next Steps, the British Cohort Study and the National Child Development Study. Combining analyses across surveys with random effects meta‐analysis, there was evidence that people with disabilities were significantly more likely to report having had COVID‐19 and had significantly increased levels of stress, less exercise, poorer sleep patterns, more conflict with their partner and others in their local area, and to have less trust in the government. While most outcomes did not differ significantly between participants with and without disability, the findings suggest that in the early days of COVID‐19 a detrimental impact emerges for those with disabilities which is more pronounced among older people with disabilities. Future research is needed to determine the longer‐term impact of the pandemic. [ABSTRACT FROM AUTHOR]

Objective: Around half of women do not take adjuvant endocrine therapy (AET) as prescribed. Research suggests that adherence rates vary across ethnic groups. This study compared AET adherences rates in White British women and women from minority ethnic groups in the United Kingdom. Methods: This is an observational study with 2001 breast cancer survivors recruited from outpatient clinics. Eligible women were diagnosed with primary breast cancer and prescribed AET within the last 3 years. Adherence was measured using the Medication Adherence Rating Scale. Eligible women were asked to complete a questionnaire pack that collected sociodemographic data such as age, relationship status and ethnicity. Independent samples t tests and χ2 tests were used to compare White British women and women from minority ethnic groups on self‐reported adherence to AET. Results: Of White British women, 27.8% were classed as non‐adherent, compared to 44.4% of women from minority ethnic groups. A logistic regression controlling for relevant demographics indicated that women from minority ethnic groups had a significantly higher risk of non‐adherence than women who were White British (odds ratio = 1.50, p = 0.03) Conclusion: Rates of non‐adherence to AET are higher in women from minority ethnic groups, which may contribute towards racial disparities in breast cancer outcomes. Research with larger and more diverse samples is needed to explore this further and to investigate the psychosocial factors driving differences in adherence. [ABSTRACT FROM AUTHOR]

Objective: The Covid‐19 pandemic led to challenging discussions between oncology clinicians and patients regarding additional risks posed by SARS‐CoV‐2 infection whilst receiving systemic anti‐cancer therapies (SACT). We assess the potential factors affecting discontinuation of adjuvant early breast cancer treatment during the pandemic. Methods: Data were collected on all patients with early breast cancer undergoing adjuvant SACT, between 16 March and 17 April 2020 at a single UK cancer centre. Univariate binary logistic regression analysis was performed on variables including age, recurrence risk, Index of Multiple Deprivation decile, presence of physical comorbidities, modality of treatment (neoadjuvant or adjuvant), type of treatment (cytotoxic chemotherapy or monoclonal antibodies), percentage of cycles completed and availability of alternative treatments, with a binary dependent variable on treatment discontinuation. Results: Sixty‐two patients with early breast cancer were identified: 18 receiving neoadjuvant and 44 adjuvant therapies. Median age was 57.5 years (range 31–75 years). Age (P = 0.02), percentage of treatment cycles completed (P = 0.014) and presence of alternative treatment options (P = 0.019) were significant factors for SACT discontinuation during the height of the Covid‐19 pandemic. Conclusion: Factors affecting patients' decisions to discontinue SACT for early breast cancer during the Covid‐19 pandemic were elucidated, which may help identify patients requiring additional support. [ABSTRACT FROM AUTHOR]

Objective: The objective of this work was to explore head and neck cancer (HNC) patients' and their family members' views on acceptability and feasibility of patient‐initiated follow‐up (PIFU), including concerns and anticipated benefits. Methods: Patients were recruited from UK HNC clinics, support groups and advocacy groups. They completed a survey (n = 144) and/or qualitative interview (n = 30), three with a family member. Qualitative data were analysed thematically, quantitative data using descriptive statistics. Results: Preference for follow‐up care in HNC was complex and individual. Many patients thought PIFU could beneficially reallocate health care resources and encourage self‐management. Patients' main concerns with PIFU were losing the reassurance of regular clinic appointments and addressing mental well‐being needs within PIFU, possibly using peer support. Patients were concerned about their ability to detect recurrence due to lack of expertise and information. They emphasised the importance of a reliable, direct and easy urgent appointment service and of feeling supported and heard by clinicians. Patients believed family and friends need support. Conclusion: PIFU may be feasible and acceptable for certain HNC patients, providing it addresses support for mental well‐being, provides quick, reliable and direct clinician access and information on "red flag" symptoms, and ensures patients and their caregivers feel supported. [ABSTRACT FROM AUTHOR]

Guillain‐Barré syndrome (GBS) has several enduring effects that can lead to further harm and/or lower quality of life. These effects include falling and body pain, neither of which have been fully explored. This study aims to examine the risk factors associated with falling and potential causes of body pain in a post‐GBS population. A cross‐sectional survey of 216 participants was conducted using an electronic questionnaire that included. Self‐report measures for: overall health, balance, anxiety and depression levels, body pain and demographics related to GBS experience and falls. A large proportion of individuals post‐GBS experience ongoing problems beyond those expected with ageing. Comparative tests indicated that people reporting falls in the previous 12 months had: poorer levels of mobility, poorer F‐scores, higher levels of body pain, poorer balance, poorer anxiety and depression scores and higher levels of fatigue. Gender did not appear to contribute to falls. Injuries following falls were associated with a lack of physiotherapy postdischarge and time since GBS. In a regression analysis of the identified and expected key variables, age and body pain statistically predicted falls. In over a quarter of cases reported here, respondents did not receive community physiotherapy following hospital discharge. In the midst and aftermath of COVID‐19, provision of rehabilitation needs to be recalibrated, not just for COVID patients, but the wider community with ongoing needs. Issues around well‐being and quality of life in the post‐GBS community also need further consideration. [ABSTRACT FROM AUTHOR]

Aim: The main aim of this study was to understand what health and wellbeing initiatives are helpful for health care workers' stress and psychological distress during the Covid‐19 pandemic. Background: Health care workers are at increased risk of poor mental health during health emergencies; understanding support required for health care workers is of paramount importance. Methods: Participants were health care workers at a health and social care organization (N = 159). The study included an online questionnaire including an evaluation of health and wellbeing initiatives and measures of perceived stress and psychological distress. Results: The highest rated resources were counselling, personal protective equipment (PPE) and Covid‐19 testing. Those who accessed yoga reported significantly less stress and psychological distress than those who did not access yoga. Conclusions: Health care workers with higher stress and psychological distress felt less supported by their organization, less listened to and less involved in organizational decisions. Implications for nursing management: Practical implications are discussed such as forward planning for health emergencies (e.g., PPE supply), accessible Covid‐19 testing as well as budgeting for counselling services and exercise classes. In addition, targeted support for those diagnosed with Covid‐19 is recommended, alongside involvement of staff members in organizational decisions. [ABSTRACT FROM AUTHOR]

BARTLETT Y.K., SELBY D.L., NEWSHAM A., KEDING A., FORMAN D., BROWN J., VELIKOVA G. & WRIGHT P. (2012) European Journal of Cancer Care Developing a useful, user-friendly website for cancer patient follow-up: users' perspectives on ease of access and usefulness UK cancer survival has improved, leading to an increase in review patients and pressure on clinics. Use of the Internet for information exchange between patients and healthcare staff may provide a useful adjunct or alternative to traditional follow-up. This study aimed to develop and evaluate a website for use in follow-up cancer care in terms of usability, feasibility and acceptability. A website was developed and underwent iterative amendment following patient usability testing in focus groups. Patients on follow-up completed a Computer and Internet Usage Questionnaire. Internet users consented to a randomised crossover study to complete paper and online questionnaires, browse the website and participate in a website evaluation interview. Patient website use was tracked. Usability: Website changes were made following patient testing ( n= 21). Patients would have liked a 'personalized' website with links to their clinical team, out with the scope of this study. Feasibility: The majority of participants (65%) had Internet access. Age remained a differentiating factor. Acceptability: Final evaluation ( n= 103) was positive although many would like to maintain face-to-face hospital contact. User involvement in website design can ensure patient needs are met. A website model for follow-up will suit some patients but others will prefer clinical contact. [ABSTRACT FROM AUTHOR]

We examined the costs and cost‐effectiveness of the Meeting Centre Support Programme (MCSP) implemented and piloted in the UK, Poland and Italy, replicating the Dutch Meeting Centre model. Dutch Meeting Centres combine day services for people with dementia with carer support. Data were collected over 2015–2016 from MCSP and usual care (UC) participants (people with dementia‐carer dyads) at baseline and 6 months. We examined participants' health and social care (HSC), and societal costs, including Meeting Centre (MC) attendances. Costs and outcomes in MCSP and UC groups were compared. Primary outcomes: Persons with dementia: quality‐adjusted life years (EQ‐5D‐5L‐derived); QOL‐AD. DQoL was examined as a secondary outcome. Carers: Short Sense of Competence Questionnaire (SSCQ). Incremental cost‐effectiveness ratios (ICER) and cost‐effectiveness acceptability curves were obtained by bootstrapping outcome and cost regression estimates. Eighty‐three MCSP and 69 UC dyads were analysed. The 6‐month cost of providing MCSP was €4,703; participants with dementia attended MC a mean of 45 times and carers 15 times. Including intervention costs, adjusted 6‐month HSC costs were €5,941higher in MCSP than in UC. From the HSC perspective: in terms of QALY, the probability of cost‐effectiveness was zero over willingness‐to‐pay (WTP) ranging from €0 to €350,000. On QOL‐AD, the probability of cost‐effectiveness of MCSP was 50% at WTP of €5,000 for a one‐point increase. A one‐point gain in the DQoL positive affect subscale had a probability of cost‐effectiveness of 99% at WTP over €8,000. On SSCQ, no significant difference was found between MCSP and UC. Evidence for cost‐effectiveness of MCSP was mixed but suggests that it may be cost‐effective in relation to gains in dementia‐specific quality of life measures. MCs offer effective tailored post‐diagnostic support services to both people with dementia and carers in a context where few evidence‐based alternatives to formal home‐based social services may be available. [ABSTRACT FROM AUTHOR]

Objective: The objective of this study is to investigate primary care use by men with recent onset of lower urinary tract symptoms (LUTS) to identify differences in presentation and investigation that may explain ethnic inequality in prostate cancer outcomes. Methods: This is a multi‐method study of men presenting LUTS to primary care. Two hundred seventy‐four men completed a self‐administered questionnaire, and 23 participated in face‐to‐face interviews. Regression analyses investigated ethnic differences in (a) the period between symptom onset and first primary care presentation (patient interval) and (b) the interval between first primary care presentation and investigation with prostate‐specific antigen (PSA) and digital rectal examination (DRE). Interview data were analysed using thematic analysis. Results: Half (144, 53%) reported a solitary first symptom, although multiple first symptoms were also common, particularly in Asian and Black men. There was no difference between ethnicities in patient interval or time from presentation to investigation. However, Asian men were offered less PSA testing (odds ratio 0.39; 95% confidence interval 0.17–0.92; p = 0.03). Qualitative data revealed ethnic differences in general practitioners' offer of DRE and PSA testing and highlighted limitations in doctor–patient communication and safety netting. Conclusion: Our study showed only small differences in primary care experiences, insufficient to explain ethnic inequalities in prostate cancer outcomes. [ABSTRACT FROM AUTHOR]

Aim: To investigate how distributed leadership via the Shared Governance programme influences employee engagement, empowerment, job satisfaction and turnover intentions among direct care nursing staff in a large UK hospital. Background: Increasing turnover rates and shortages of health care staff in the UK has called for interventions to improve employee engagement and job satisfaction. Methods: 116 direct care nursing staff were sampled in a mixed‐methods explanatory sequential design. A maximum variance sample of 15 participants were subsequently interviewed to gain a deeper understanding of the motivations and attitudes that influenced employee outcomes through distributed leadership. Results: Higher levels of distributed leadership predicted increased employee engagement and job satisfaction, and lower turnover intentions. Staff also felt more empowered and committed to the organisation despite some challenges experienced in implementing the Shared Governance programme. Conclusion: Distributed leadership was found to be beneficial in promoting employee engagement and empowerment, increasing job satisfaction and organisational commitment and reducing turnover intention in the UK health care setting. Implications for Nursing Management: By encouraging the practice of distributed leadership at work, health care staff can become more engaged and empowered, leading to higher rates of job retention, job satisfaction and organisational commitment. [ABSTRACT FROM AUTHOR]

Objectives: The COVID‐19 pandemic is having considerable impact on cancer care, including restricted access to hospital‐based care, treatment and psychosocial support. We investigated the impact on unmet needs and psychosocial well‐being. Methods: One hundred and forty four participants (77% female), including people with cancer and their support networks, were recruited. The most prevalent diagnosis was breast cancer. Forty‐one participants recruited pre‐pandemic were compared with 103 participants recruited during the COVID‐19 pandemic. We measured participants' unmet supportive care needs, psychological distress and quality of life. Results: Half of our patient respondents reported unexpected changes to treatment following pandemic onset, with widespread confusion about their longer‐term consequences. Although overall need levels have not increased, specific needs have changed in prominence. People with cancer reported significantly reduced anxiety (p = 0.049) and improved quality of life (p = 0.032) following pandemic onset, but support network participants reported reduced quality of life (p = 0.009), and non‐significantly elevated anxiety, stress and depression. Conclusion: Psychological well‐being of people with cancer has not been detrimentally affected by pandemic onset. Reliance on home‐based support to compensate for the lost availability of structured healthcare pathways may, however, explain significant and detrimental effects on the well‐being and quality of life of people in their support and informal care networks. [ABSTRACT FROM AUTHOR]

Introduction: Mastectomy patients' satisfaction with reconstructive options has not been examined. Methods: A national study measured 18‐month satisfaction with reconstructive options and collected case‐mix and reconstructive offer and uptake data on breast cancer patients having mastectomy with or without immediate reconstruction (IR) in England between January 2008 and March 2009. Multivariable logistic regression examined the relationship between satisfaction, age, IR offer and uptake, and clinical suitability. Results: Of 4796 patients, 1889 were not offered IR, 1489 declined an offer and 1418 underwent it. Women not offered IR were more likely older, obese or smokers and had higher ASA grades, ECOG scores, tumour burdens and adjuvant chemotherapy and radiotherapy likelihoods (9% of lowest suitability group offered IR; 81% in highest suitability group). 83.7% were satisfied with their reconstructive options, varying significantly by IR offer and uptake (76.1% for those not offered IR; 85.8% for those who declined IR; 91.7% following IR). Older women and women deemed more suitable for IR were more often satisfied (p‐values <0.001). Conclusions: Satisfaction varied by offer and uptake status, age and suitability score. Clinicians should target equity for women deemed unsuitable by exploring their needs and desired outcomes, standardising operative fitness assessments and utilising shared decision‐making aids. [ABSTRACT FROM AUTHOR]

With ageing comes an increased risk of poor health and social isolation, particularly in poorer populations. Older people are under‐represented in research and as a result interventions may not take account of their context or barriers to participation. In co‐creative work, future service users work with professionals on an equal basis to design, develop and produce a service or intervention. Our objectives were to (a) undertake a co‐creation study with older people living in a northern city in the United Kingdom, (b) explore maintenance of health and well‐being in older age, (c) explore the application of co‐creation with an older community population and (d) evaluate the process and inform future work. The study was conducted during 2017 by a project team of 10 lay community dwelling older people and four university researchers. Findings demonstrate that state of mind and of health were key to well‐being in older age. Feeling safe, comfortable and pain free were important along with being able to adapt to change, have choice and a sense of personal freedom. Social connectedness was seen as the keystone to support healthy behaviours. Rather than developing new interventions, there was a perceived need to connect people with existing resources and provide a human 'bridge' to address barriers to accessing these. In conclusion, the co‐creation process proved productive, even when undertaken on a small scale. The scope of the project needs to be realistic, to use diverse methods of recruitment and skilled facilitators, and to prepare well in terms of accessibility, simple systems and appropriate information provision. [ABSTRACT FROM AUTHOR]

Primary and community care in the United Kingdom are under increasing workforce and time pressures. How these pressures affect the delivery of cancer care has rarely been explored. This service evaluation aimed to elucidate some of the views of the workforce in this sector of what work in cancer care is left undone, and what they would like to be able to offer more of. An exploratory sequential design was taken including a questionnaire and interviews asking primary and community care staff in London about their workload in cancer care. Surveys were analysed using descriptive statistics. The evaluation revealed a perception from primary and community care that there is work in cancer care that is currently being left undone. 64% of the workforce across all professions reported that they worked 10 or more hours of unpaid overtime per week. Respondents identified psychological care for people with cancer (PWC), and bereavement care for families and carers of PWC as the most common areas that were left undone. They would like to do more proactive work, in place of the current reactive 'fire‐fighting' they are doing. For example, signposting available services to PWC and access to nutritional support. There was a desire for acknowledgement of the time and workforce pressures in primary and community care, and how these are hindering the delivery of care for PWC. [ABSTRACT FROM AUTHOR]

Acquired brain injury (ABI) can lead to life‐long changes and disability. The complex and extensive nature of behavioural, cognitive, executive, physical and psychological difficulties mean ABI survivors and their families may come into contact with a range of health and social care services as part of their long‐term care. This study aimed to understand the ABI knowledge base of professionals across a range of organisations within the UK, and to identify areas for improvement. This was achieved through a mixed methods approach using a mixed methods questionnaire (117 participants) and qualitative semi‐structured interviews about service experiences (31 participants) of professionals and service users (families and individuals with ABI). Participants included UK health and social care professionals, ABI specialists, ABI survivors and family members. Data were collected from February 2017 to April 2018. The results of the study identified a lack of knowledge and understanding of ABI among health and social care professionals in the UK, from those involved in acute care through to long‐term community services. Poor knowledge was associated with a lack of understanding of "hidden" disabilities associated with ABI, a lack of empathy and a lack of knowledge regarding specific safeguarding. Health and social care professionals across a range of services could benefit in ABI‐specific training to improve their knowledge and improve the service currently being provided to individuals with ABI and their families. [ABSTRACT FROM AUTHOR]

This study assessed the subjective well‐being and perceived stress of unpaid carers of disability benefit claimants. A total of 129 carers from the UK were surveyed between July and September 2017, using a cross‐sectional design. Carers, who provided unpaid support to sick or disabled friends, family or neighbours in a non‐professional capacity, reported here as unpaid carers, were asked to complete a web‐based questionnaire comprising of the Perceived Stress–10‐item Scale (PSS‐10), the Personal Wellbeing Index–Adult (PWI‐A), sociodemographic characteristics, the time they spent caring per day and the number of Personal Independence Payment and Work Capability Assessment interviews prepared for and attended by the person they cared for. Hierarchical regression analyses were performed to assess the effects of the number of benefit assessments on stress and well‐being scores, controlling for carers' sociodemographic characteristics and the time they spent caring. Analyses revealed that the number of times that claimants were exposed to benefit assessments significantly and negatively predicted unpaid carers' well‐being and was positively related to their stress levels. After controlling for sociodemographic characteristics and hours supporting per day, benefit assessments predicted 8.1% of perceived stress and 4.3% of well‐being variance. Being a female unpaid carer of a disability benefit claimant negatively predicted 7.5% of well‐being variance. The results offered unique evidence of the negative psychological effects of disability benefit assessments upon unpaid carers, while adding to the evidence of female carers facing increased risks of psychological distress. [ABSTRACT FROM AUTHOR]

Purpose. Desmoid-type fibromatosis (DTF) is a rare, nonmetastasising soft tissue tumour. Symptoms, unpredictable growth, lack of definitive treatments, and the chronic character of the disease can significantly impact health-related quality of life (HRQoL). We aimed at identifying the most important HRQoL issues according to DTF patients in two countries, in order to devise a specific HRQoL questionnaire for this patient group. Methods. DTF patients and healthcare providers (HCPs) from the Netherlands and the United Kingdom individually ranked 124 issues regarding diagnosis, treatment, follow-up, recurrence, living with DTF, healthcare, and supportive care experiences, according to their relevance. Descriptive statistics were used to calculate priority scores. Results. The most highly ranked issues by patients (n = 29) were issues concerning "tumour growth," "feeling that there is something in the body that does not belong there," and "fear of tumour growth into adjacent tissues or organs" with mean (M) scores of 3.0, 2.9, and 2.8, respectively (Likert scale 1–4). British patients scored higher on most issues compared to Dutch patients (M 2.2 vs. M 1.5). HCPs (n = 31) gave higher scores on most issues compared to patients (M 2.3 vs. M 1.8). Conclusion. This study identified the most relevant issues for DTF patients, which should be included in a DTF-specific HRQoL questionnaire. Additionally, we identified differences in priority scores between British and Dutch participating patients. Field testing in a large, international cohort is needed to confirm these findings and to devise a comprehensive and specific HRQoL questionnaire for DTF patients. [ABSTRACT FROM AUTHOR]

Aims: To create a cohort of advanced practice nurses from across the UK and to report the initial questionnaire including demographics, work experiences and well‐being. Background: In the UK, advanced nursing practice is not regulated. This has led to the concern that advanced nurses are working in very different ways with different levels of autonomy and support. Methods: Participants were recruited via university and Royal College of Nursing mailing lists, and social media adverts. They completed the initial questionnaire about their background and workplace, work experiences, credentialing and well‐being. Results: A total of 143 nurses were recruited to the cohort and 86 completed the survey. Over 40 job titles were reported, across five pay bands. Job title was not correlated with pay band (p =.988). Participant well‐being was not significantly different from the UK general population, but they reported high rates of work‐related stress (44.2%) compared with the National Health Service national average (37.9%). Conclusion: There is a wide disparity in pay, which is not reflected in title or setting. The high levels of work‐related stress require further exploration. Implications for nursing management: The range of experiences reported here should encourage managers to evaluate whether title, pay and support mechanisms for Advanced Practice Nurses in their organisations align with suggested national standards set by Royal Colleges and government departments. [ABSTRACT FROM AUTHOR]

Recovery Colleges aim to assist people with mental health difficulties in the journey to recovery through education. They bring together professional and lived experience of mental health challenges in a non‐stigmatising college environment and operate on college principles. All courses are designed to contribute towards well‐being and recovery. Despite the ever‐growing number of Recovery Colleges (both in the UK and internationally), the evaluative evidence is limited; comprising mostly non‐peer‐reviewed evaluations, audits and case studies. The present article comprises a mixed‐methods evaluation of a newly established Recovery College in South East Essex, UK. The evaluation comprised questionnaires of mental well‐being and social inclusion at baseline and 3 and 6 month follow‐up, in addition to three focus groups. There were significant improvements in both mental well‐being and social inclusion from baseline to 6 month follow‐up (25 participants completed the measure of well‐being at both time points and 19 completed the measure of social inclusion). This was supported by additional free‐text questionnaire comments and focus group findings (17 participants participated across the focus groups), with reports of increased confidence, reduced anxiety and increased social inclusion/reduced social isolation. Additionally, at 6 month follow‐up a majority of respondents were planning on attending courses external to the Recovery College, volunteering and/or gaining paid employment. Challenges and recommendations identified through the focus groups indicate the importance for standardisation of processes (which is particularly important when multiple organisations are involved in the running of a Recovery College), as well as consideration of longer‐running courses. Funders should continue to invest in the Recovery College movement as the growing evidence‐base is demonstrating how these colleges can help address the high prevalence of mental health difficulties, by promoting mental well‐being and social inclusion. [ABSTRACT FROM AUTHOR]

Redesigned health systems could meet the rising demand for healthcare, with community pharmacy currently an underused resource for the treatment and management of patients requiring urgent care. This study aimed to investigate whether a training intervention delivered over 2 days to community pharmacists resulted in behaviour and practice change. Validated measures of psychological motivation and capability factors relevant to understanding behaviour and behaviour change were collected 1 week before, 1 week after and 2 months after training in a non‐controlled before and after study design. Two targeted behaviours of the intervention were the primary outcome measures: taking a structured history and applying clinical examination techniques to patients requiring urgent care. Secondary outcomes measured participants' reported patient management behaviours to investigate possible bridging of gaps in the health system. Training was provided in 14 locations in the UK to 258 community pharmacists, with data collection occurring from July 2015 to September 2016. In total, 81 participants completed all three rounds of data collection (31.4%). Findings suggest that 1‐week post‐training significant changes in psychological capability had taken place, and that these were sustained 2 months later: of the eight domains influencing behaviour and stimulating behaviour change, knowledge, skills, professional role, beliefs about capabilities and goals all increased significantly between T1 and T2, and T1 and T3 (all p < 0.0001). At T3, participants were more likely to have taken a structured history than performed a clinical examination, and reported both managing patients themselves and changing referral practices to other healthcare providers. Participants reported workload and the need for liability insurance as structural and contextual barriers to implementation. While findings suggest the potential to transform models of care through training to extend community pharmacists' practice these barriers to successful implementation of the urgent care service would need to be addressed if this service is rolled out nationally. [ABSTRACT FROM AUTHOR]

Prolonged diagnostic intervals are associated with poorer outcomes, and the patient interval appears to be a substantial contributor to the overall length of the diagnostic interval. This study sought to understand how the broader context of people's lives influenced symptom appraisal and help‐seeking, comparing experiences by length of the patient interval. Patients referred with a suspicion of lung or colorectal cancer were invited to complete a questionnaire about their symptoms, with 26 respondents purposively sampled to take part in a semi‐structured interview about their patient intervals. Embodied experience, appraisal, help‐seeking decision‐making and consultation were identified as component stages of the patient interval, with the factors affecting movement between these stages located in one of four contextual domains: individual experience, interpersonal relationships, healthcare system interactions and social and temporal context. The length of the patient interval was related to the type of symptom(s) experienced, discussion of symptoms with others and the social responsibilities people held during symptomatic periods. A contextual model of the patient interval illustrates the stages and domains of this interval, as grounded in the data from this study. The model has potential application to future studies examining the patient interval for a range of symptoms. [ABSTRACT FROM AUTHOR]

Abstract: This research investigates whether holiday clubs have the potential to reduce food insecurity among households in the United Kingdom. We survey parents (n = 38) of children attending seven different holiday clubs to estimate the percentage of children in those programmes who come from food insecure households. Results suggest that 42% (16 out of 38 respondents) of children come from households defined as “food insecure” and 24% (9 out of 38 respondents) come from households that are “food insecure with hunger.” When secure and insecure households are compared, we discover that food insecure households benefit the most from holiday clubs, which suggests that they may play an important role in mitigating household food insecurity. [ABSTRACT FROM AUTHOR]

Aim To validate a framework of factors that influence the relationship of transformational leadership and safety climate, and to enable testing of safety chain factors by generating hypotheses regarding their mediating and moderating effects. Background Understanding the patient safety chain and mechanisms by which leaders affect a strong climate of safety is essential to transformational leadership practice, education, and research. Methods A systematic review of leadership and safety literature was used to develop an organising framework of factors proposed to influence the climate of safety. A panel of 25 international experts in leadership and safety engaged a three-round modified Delphi study with Likert-scored surveys. Results Eighty per cent of participating experts from six countries were retained to the final survey round. Consensus (>66% agreement) was achieved on 40 factors believed to influence safety climate in the acute care setting. Conclusions Consensus regarding specific factors that play important roles in an organisation's climate of safety can be reached. Generally, the demonstration of leadership commitment to safety is key to cultivating a culture of patient safety. Implications for Nursing Management Transformational nurse leaders should consider and employ all three categories of factors in daily leadership activities and decision-making to drive a strong climate of patient safety. [ABSTRACT FROM AUTHOR]

The experiences of disease and treatment for patients diagnosed with head and neck cancer (H& NC) are known to be important indicators of the quality of care but are represented poorly in the literature. Survival is a major outcome measure to which health-related quality of life ( HRQoL) adds detail but outcomes are not fully representative of the patients' experiences because quality of care and reality of treatment are overlooked. This study explored the HRQoL, quality of care and reality of treatment themes using a mixed-methods approach, Q Methodology. In total, 18 participants who were at least 12 months post-diagnosis rank-ordered 45 prepared statements to reflect their own experiences of H& NC. After the statements had been sorted, the participants reviewed the order in an interview to clarify experiences. The statements become a way of facilitating the discussion because the participant can explain the position of specific statements that are notable for them. The ranking was factor-analysed case-wise and five factors provided the best conceptual fit: meaning and attachment to illness; overwhelmed by the cancer; surviving or not; change and recovery; and keep control for the greater good of others. The findings suggest there are distinct ways that H& NC patients experience the disease and its treatment. The concept of the experience being different and defined for individuals has practical implications at a clinical level and is a way of ensuring care is truly patient-centred. [ABSTRACT FROM AUTHOR]

Over the last three decades, quality of life (QoL) has been advocated as an indicator of social care outcomes for adults with intellectual disabilities. In England, the Adult Social Care Survey ( ASCS) is conducted annually by local authorities to contribute to the evidence base of the care-related QoL of people receiving publicly funded adult social care. This study explores relationships between QoL and non-care-related factors to identify relationships that could inform social care policy and practice. Cross-sectional data collected from 13,642 adults who participated in the 2011 and 2012 ASCS were analysed using regression to explore the factors associated with QoL measured using the Adult Social Care Outcomes Toolkit ( ASCOT). Self-rated health, rating of the suitability of home design and anxiety/depression were all found to be significantly associated with ASCOT. Other individual and survey completion factors were also found to have weak significant relationships with ASCOT. The models also indicate that there was an increase in overall ASCOT-QoL and in five of the eight ASCOT domains ( Personal comfort and cleanliness, Safety, Social participation, Occupation and Dignity) between 2011 and 2012. These findings demonstrate the potential value of QoL data for informing policy for people with intellectual disabilities by identifying key factors associated with QoL, the characteristics of those at risk of lower QoL, and QoL domains that could be targeted for improvement over time. Future research should establish causal relationships and explore the risk adjustment of scores to account for variation outside of the control of social care support. [ABSTRACT FROM AUTHOR]

This article aims to investigate associations between perceived control and health-related quality of life ( HRQOL) with dietary changes after prostate cancer diagnosis and to explore General Practitioners' ( GPs) perceptions on the role of diet in prostate cancer post-diagnosis. Ninety-five prostate cancer patients completed measures of dietary change, one for after diagnosis and another for after therapy. They also scored their HRQOL and perceived control. There were discrepancies in dietary changes reported between a general question (28.4% no dietary changes) and a specific (42.1%-51.5% range of no change for various food items). Most patients initiated healthy changes. Patients who changed their diet after diagnosis had lower cognitive functioning and external locus of control (doctors). Patients who changed their diet after therapy had lower cognitive and emotional functioning, quality of life and external locus of control (doctors). Then, fourty-four GPs responded to an online survey. Their open-ended responses were analysed using Content Analysis. They reported interest in the role of diet in cancer but also lack of relevant knowledge. They were skeptical on providing information. Clinical interventions should consider patients' cognitive ability, their relationship with their health professional and their wellbeing. Also, GPs' confidence to provide dietary advice needs to be addressed. [ABSTRACT FROM AUTHOR]

It is thought that integrating health and social care provision can improve services, yet few evaluations of integrated health and social care initiatives have focused on changes in clinical outcomes and used comparator groups. The aim of this pilot study was to identify whether attendance at an integrated health and social care day unit ( IHSCDU) affected selected outcomes of functional mobility, number of prescribed medications, and physical and psychological well-being. A secondary aim was to examine the utility of the tools to measure these outcomes in this context; the feasibility of the recruitment and retention strategy and the utility of the comparator group. A before-and-after comparison design was used with non-randomised intervention and comparator arms. The intervention arm comprised 30 service users attending the IHSCDU and the comparator arm comprised 33 service users on a community nursing caseload. Measures of functional mobility (Barthel's Index) and physical and psychological well-being ( SF-12®) were taken from all participants in both arms at three data collection points: baseline, 4 and 9 months later, between November 2010 and September 2012. Participants and outcomes were identified prospectively and in both arms, the individual was the unit of assignment. No significant changes were noted in functional mobility and psychological well-being and the number of medications prescribed increased in both arms. There was a trend towards a significant difference between study arms in the change in the SF-12® physical health outcome measure and this outcome measure could be usefully explored in future studies. The recruitment and retention strategy was feasible although our comparator group had some limitations in not being closely matched in terms of age, functional mobility and mental well-being. [ABSTRACT FROM AUTHOR]

National guidance in England exhorts Clinical Commissioning Groups [groups of general practices established to organise delivery of National Health Service ( NHS) care in their local area ( CCGs)] to commission healthcare for those living in the community who are serving non-custodial sentences called 'community orders'. This includes 'approved premises' - accommodation providing enhanced supervision for offenders and individuals on bail who may present a high risk of harm to the public. In this national survey of CCGs in England, we compared the extent to which healthcare services were commissioned for probationers in 2014 with similar data we collected in 2013. A freedom of information ( FOI) request was sent to all CCGs ( n = 212) and Mental Health Trusts (organisations commissioned to provide health and social care services to individuals with mental health disorders) ( n = 53) in England. Mental Health Trusts were included as they were known to fund mental health services for probation as part of their block funding allocations. A small number of basic questions were asked. The response rate was good with 65% of CCGs ( n = 137) and 68% ( n = 36) of Mental Health Trusts responding. The findings show that the proportion of CCGs commissioning healthcare for probation reduced from 7% to 1%, with 20% of CCGs stating that funding healthcare for this group was the responsibility of the NHS England Area Teams. There was also a reduction in the proportion of Mental Health Trusts funding healthcare for probation but from a much higher baseline, that is from 70% to 61%. The prevalence of mental health disorders in probation is high, so it was of concern that only 12% of Mental Health Trusts provided a service to support approved premises and just 32% provided clinics in probation. The results are discussed within the context of the NHS reforms and the government's plans in England to reform probation. [ABSTRACT FROM AUTHOR]

The article discusses the author's yearly Survivorship Conference where 91 questionnaires were filled out by prostate cancer survivors with majority of patients stating that they do not need advice on physical fitness, side effects of treatment and sexual concerns. Most of them however requested information on their condition to be available and information on new developments in prostate cancer and information on side effects which they were happy to receive in a community-based setting.

This study aims to determine the prevalence rate of current non-suicidal self-injury ( NSSI) among trans individuals, in comparison with a control sample of non-trans adults. It also aims to compare those with current NSSI and those with no history of NSSI in terms of psychological well-being, self-esteem, body dissatisfaction, social support and demographic factors. Participants were 97 adults, diagnosed with transsexualism ( ICD-10, F64.0), attending a national gender clinic in the United Kingdom, and a matched control group. Clinical participants were all engaged on the treatment pathway. Participants completed the following self-report measures: Self-Injury Questionnaire - Treatment Related ( SIQ- TR), Symptom Checklist 90 Revised ( SCL-90-R), Rosenberg Self-Esteem Scale ( RSE), Hamburg Body Drawing Scale ( HBDS) and Multidimensional Scale of Perceived Social Support ( MSPSS). The results showed that the trans participants had a significantly higher prevalence of current NSSI behaviour than the non-trans group, with 19% currently engaging in NSSI. Current NSSI was also significantly more prevalent among trans men than trans women. Compared with both trans and non-trans participants with no history of NSSI, trans participants with current NSSI had significantly higher scores on SCL; significantly lower scores on RSE, HBDS and MSPSS; and were younger in age. The study concludes that trans men, specifically, are more at risk of NSSI than trans women and the general population, even when on the treatment pathway. Those who currently self-injure have greater psychopathology, lower body satisfaction, lower self-esteem, lower social support and tend to be younger, than those who do not engage in NSSI. [ABSTRACT FROM AUTHOR]

The uptake of advance care planning ( ACP) is particularly low among people with dementia. This may reflect barriers to communication between professionals, patients and families in the face of lack of consensus about the process. This study aimed to methodically investigate consensus views of how ACP should be explained and carried out with people with dementia. A three-round Delphi study explored views of how and when ACP should be addressed, what should be covered, who should be involved and why rates of ACP are low. Seventeen participants took part comprising family members, old age psychiatrists and policy makers. Thirty-two items reached consensus. The panel agreed on 11 different areas for discussion. They concurred that ACP was best addressed after the person has come to terms with the diagnosis when the individual feels ready to do so. There was a consensus view that the process should be couched in terms of 'certain possibilities'. Consensus items emphasised personal choice and autonomy, while also prioritising the need to discuss financial aspects and to include spouses. There was no consensus that professionals should be involved, although the panel viewed them as carrying some responsibility for low uptake. It is suggested that ACP should include general discussion of values as well as coverage of specific points. Professionals need to offer discussion and information on ACP, but also make clear that the patient has the right to choose whether to pursue ACP or not. [ABSTRACT FROM AUTHOR]

The study purpose was to examine self-management ( SM) use among cancer survivors; and to explore variations in uptake of SM in survivorship and whether these differed in relation to age, income, gender, ethnicity, cancer type and treatment type. This is an important area for exploration as SM utilisation has the potential to impact on the health status, health behaviours and quality of life ( QoL) of cancer survivors. A postal survey was conducted among 445 cancer survivors identified from a hospital in the West Midlands, UK. Demographic data were collected and respondents were asked to identify which practices across six SM categories - diet, exercise, complementary and alternative medicine ( CAM), psychological therapies, support groups and spirituality/religion - they had used (if any). The findings indicate that the large majority (91%) had used some form of SM after their cancer treatment. Exercise (84%) and diet (56%) were the most popular SM interventions for cancer survivors and socio-demographic and cancer-related factors were associated with SM uptake. These findings can form the basis for designing and implementing appropriate SM interventions aimed at improving the health, well-being and QoL of cancer survivors. [ABSTRACT FROM AUTHOR]

As more patients survive cancer for longer term, the long-term and late effects of treatments become increasingly important issues for cancer survivors and providing information to enable survivors to recognise and manage them becomes an increasingly pressing challenge for health care professionals. The aim of this study was to explore the experiences of cancer survivors regarding information given on potential long-term and late effects of pelvic radiotherapy. Semi-structured interviews were conducted with 28 cancer survivors who had had radiotherapy to the pelvic area for a range of cancers 1-11 years previously. Participants were recruited using maximum variation sampling from a larger questionnaire survey of patients treated at one hospital. Interviews were recorded, transcribed and analysed using Framework. Participants recognised the value of information to reassure and to inform action but also its potentially undesirable effects to frighten or raise anxieties about future problems and its inherent limitations in meeting their wider needs. They identified the timing, amount of information and context in which it was given as of particular importance. Information based on personal experience was also valued. These findings highlight the importance of appropriate, individualised information during treatment, at hospital discharge and subsequently in primary care. [ABSTRACT FROM AUTHOR]

Haematopoietic stem cell transplantation ( HSCT) cures many haematological cancers. Recovery post- HSCT is physically and psychologically challenging, lasting several months. Beyond the first post-transplant year, a fifth report difficulties encompassing practical, social and emotional domains, including finance and employment. We investigated the feasibility, acceptability and impact of a life coaching intervention designed to address psychosocial 'survivor' concerns of HSCT recipients and facilitate transition to life post-treatment. A concurrent embedded experimental mixed-method design was employed. Pre- and post-intervention data collection comprised qualitative semi-structured telephone interviews and quantitative postal questionnaires. Seven purposively sampled HSCT recipients (<18 months) participated, reporting on one-to-one life coaching delivered by a professional life coach fortnightly over 8 weeks. Participants reported less anxiety, depression and fewer survivor concerns post-intervention, with a trend for lower social difficulties and increased functional well-being. Perceived self-efficacy was unchanged. Life coaching was feasible to deliver and acceptable to the participants who indicated it was a positive experience, with benefits described in diverse areas including work, lifestyle and hobbies. Life coaching within cancer services potentially offers the means to address psychosocial concerns and support transition to life after treatment, enabling patients to reach their potential, e.g. returning to employment and financial independence. Further investigation of this intervention in cancer survivors is warranted. [ABSTRACT FROM AUTHOR]

Advocacy serves to promote the voice of service users, represent their interests and enable participation in decision-making. Given the context of increasing numbers of people detained under the Mental Health Act and heightened awareness of the potential for neglect and abuse in human services, statutory advocacy is an important safeguard supporting human rights and democratising the social relationships of care. This article reports findings from a national review of Independent Mental Health Advocate ( IMHA) provision in England. A qualitative study used a two-stage design to define quality and assess the experience and impact of IMHA provision in eight study sites. A sample of 289 participants - 75 focus group participants and 214 individuals interviewed - including 90 people eligible for IMHA services, as well as advocates, a range of hospital and community-based mental health professionals, and commissioners. The research team included people with experience of compulsion. Findings indicate that the experience of compulsion can be profoundly disempowering, confirming the need for IMHA. However, access was highly variable and more problematic for people with specific needs relating to ethnicity, age and disability. Uptake of IMHA services was influenced by available resources, attitude and understanding of mental health professionals, as well as the organisation of IMHA provision. Access could be improved through a system of opt-out as opposed to opt-in. Service user satisfaction was most frequently reported in terms of positive experiences of the process of advocacy rather than tangible impacts on care and treatment under the Mental Health Act. IMHA services have the potential to significantly shift the dynamic so that service users have more of a voice in their care and treatment. However, a shift is needed from a narrow conception of statutory advocacy as safeguarding rights to one emphasising self-determination and participation in decisions about care and treatment. [ABSTRACT FROM AUTHOR]

Aim The project aims to assess current specialist practice in relation to the new and ever-changing healthcare climate and explore some of the issues that specialist nurses encounter. Background The current financial recession is driving a range of economic policy changes and consequently service provision, in particular the work and impact of nurses working in a specialist role, being examined. This has resulted in many specialist nurses feeling very vulnerable. Method A cross sectional survey was completed by nurses working in specialist roles ( n = 96) in a large health and social care setting in the United Kingdom. Findings A response rate of 62% was achieved: 44% provide nurse led clinics and 42% are nurse prescribers. The mean length of time qualified as a registered nurse was 27 years. Less than a third felt that the current computer system for activity recording reflected their current workload and 65% needed administrative support. Conclusion This study demonstrates the insufficient resources available to specialist nurses resulting in inappropriate but necessary, use of time and restricted opportunities for learning and development [ABSTRACT FROM AUTHOR]

Purpose The aim of this project was to develop, deliver, and evaluate a brief evidenced-based education package to enhance physical health literacy in mental health nurses. Design and Methods Pre- and post-test survey of knowledge of physical health in serious mental illness, satisfaction with the workshop, and applicability to practice. Findings Participants were motivated to attend and complete the questions. There was statistically significant knowledge gain immediately post workshop and participants described satisfaction with the content and a willingness to apply learning from the session to their practice. Practice Implications If such workshops are provided as a collaborative and relatively inexpensive way of education, they can contribute to building the capacity of mental health nurses to be literate in physical health interventions. [ABSTRACT FROM AUTHOR]