Recruiting participants for adult social care studies: challenges and mitigating strategies - methods review

Challenges are often encountered in recruiting participants into adult social care research studies, while strategies to overcome them are not widely understood or shared. This Methods Review aimed to describe the challenges in recruiting organisations and individuals for adult social care research and identify possible strategies to address them. In semi-structured interviews, 17 senior researchers in the social care field were asked about their experiences of recruitment of research participants. One of the main barriers to recruitment was variation among provider organisations, so recruitment strategies needed to be adjusted for different organisations, many of which lacked capacity for research participation. The rapidly changing nature of adult social care organisation and delivery in England also means that recruitment strategies often need to be adapted while research is in progress. Building partnerships between researchers and providers and offering financial and other incentives were suggested as mitigating strategies. In recruiting individuals, a lack of understanding of research benefit and organisations’ gatekeeping arrangements were common difficulties. Interviewees suggested: raising public awareness of adult social care research; building relationships with user/carer groups; using a variety of recruitment strategies and offering a range of participation routes. Researchers and funding bodies should allow sufficient time and resources to recruit representative samples. Researchers should share recruitment knowledge. A limitation in this review is that the individuals who participated in the review may not be representative of all adult social care researchers. This review highlights opportunities for developing recruitment in adult social care research, such as improving recruitment and participation methods; investing in research support and research capacity and increasing public engagement with adult social care research

Responding to the mental health consequences of the 2015–2016 terrorist attacks in Tunisia, Paris and Brussels: implementation and treatment experiences in the United Kingdom

Objectives: To explore whether the Screen and Treat Programme to support United Kingdom citizens potentially affected by terrorist attacks in Tunisia (2015), Paris (2015) and Brussels (2016) was effective in identifying and referring people to mental health services, to examine the programme’s acceptability to users and to understand how agencies involved worked together. Methods: Individuals offered screening by the programme (n = 529) were invited to participate in the study and were sent a questionnaire. Follow-up interviews were conducted with questionnaire respondents who consented and with employees of agencies involved in the programme’s planning and delivery. Seventy-seven people affected by the attacks completed questionnaires, 35 of those were also interviewed, and 1 further person only participated in an interview. Eleven people from agencies organizing and delivering the programme and five clinician-managers were also interviewed. Results: Most service users said the attacks had a major impact on their lives. Many reported anxiety, depression, difficulty going out or travelling, sleep problems, panic attacks, flashbacks and hyper-vigilance. A third had reduced their working hours and a similar proportion had taken sick leave. Two-thirds sought help from their General Practitioner (GP) before being contacted by the programme, but almost all thought their GP had not been helpful in dealing with post-traumatic stress disorder (PTSD) or referring to appropriate care. Several people were prescribed psychotropic medication; only a few were referred to mental health professionals. Many participants used help offered by organizations external to National Health Service, with mixed experiences. Waiting times for treatment varied from no delay to a few months. Most interviewees thought the programme should have started sooner and provided more information about sources of support. Most users found treatment received via the programme helpful. Professionals involved in organizing and delivering the programme thought that bureaucratic delays in setting it up were key limitations on effectiveness. Clinician interviewees thought an outreach approach was needed to identify at-risk individuals. Conclusions: Users who took part in the programme were satisfied with their treatment, although many thought it should have been offered sooner. Funding and data sharing between agencies were the main barriers to timely contact with affected individuals. Self-referral, GP identification of PTSD and GP referral to appropriate care were regarded as ineffective, suggesting that people affected by similar future incidents should be supported better and assisted more promptly to access treatment

Peer-led self-management for people with severe mental disorders: an economic evaluation

Purpose:- We evaluated the effectiveness and cost-effectiveness of a peer-led self-management intervention for people with severe mental disorders. Design/methodology/approach:- This is a one-arm longitudinal study without control group. 262 adults with (self-reported) severe mental disorders, who have used secondary mental health services and were living in the community, were evaluated at three time-points (baseline, 6 months, 12 months). Socio-demographic data were collected at baseline. Wellbeing (Warwick-Edinburgh Mental Wellbeing Scale), functional living skills (Health Promoting Lifestyle Profile II) and service use (Client Service Receipt Inventory) data were assessed over time. Findings:- Self-management for people with severe mental disorders improved well-being and health-promoting lifestyles. After an increase in the short term, costs appeared to decrease in the longer term, although this change was not statistically significant. Due to the lack of a control group, we are unable to attribute those changes to the intervention only. Nevertheless, the self-management intervention appears to warrant further attention on both wellbeing and economic grounds. Originality/value:- Self-management may facilitate recovery, helping to support people with severe mental disorders at no additional cost. Given recent emphasis on recovery, peer workers and self-management, this peer-led self-management approach for people with severe mental disorders appears to have potential

Mindfulness online: a preliminary evaluation of the feasibility of a web-based mindfulness course and the impact on stress

OBJECTIVES: Stress has been shown to have a number of negative effects on health over time. Mindfulness interventions have been shown to decrease perceived stress but access to interventions is limited. Therefore, the effectiveness of an online mindfulness course for perceived stress was investigated. DESIGN: A preliminary evaluation of an online mindfulness course. PARTICIPANTS: This sample consisted of 100 self-referrals to the online course. The average age of participants was 48 years and 74% were women. INTERVENTIONS: The online programme consisted of modules taken from Mindfulness Based Stress Reduction and Mindfulness Based Cognitive Therapy and lasted for approximately 6 weeks. PRIMARY AND SECONDARY OUTCOME MEASURES: Participants completed the Perceived Stress Scale (PSS) before the course, after the course and at 1-month follow-up. Completion of formal (eg, body scan, mindful movement) and informal (eg, mindful meal, noticing) mindfulness activities was self-reported each week. RESULTS: Participation in the online mindfulness course significantly reduced perceived stress upon completion and remained stable at follow-up. The pre-post effect size was equivalent to levels found in other class-based mindfulness programmes. Furthermore, people who had higher PSS scores before the course reported engaging in significantly more mindfulness practice, which was in turn associated with greater decreases in PSS. CONCLUSIONS: Because perceived stress significantly decreased with such limited exposure to mindfulness, there are implications for the accessibility of mindfulness therapies online. Future research needs to evaluate other health outcomes for which face-to-face mindfulness therapies have been shown to help, such as anxiety and depressive symptoms

Psychological support for individuals historically infected with HIV and/or hepatitis C as a result of NHS-supplied blood transfusions and blood products, and for affected families

BACKGROUND: Between 1970 and 1991, between 30,000 and 33,000 people in the UK were infected with HIV and/or hepatitis C as a result of treatment with NHS blood and blood products; 2,900 deaths during 1970-2019 are estimated to be attributable to these infections, and people are still dying. The statutory Infected Blood Inquiry, launched in July 2018, has been investigating the circumstances that led to individuals becoming infected and the impacts this has had on them and their families. Among the many issues raised, the Inquiry emphasised the psychosocial impacts and the lack of access to dedicated psychological support for those infected and affected. The England Infected Blood Support Scheme (EIBSS) provides access to a discretionary payment of up to £900 for privately arranged psychological support per year (with the option of ‘further treatment’ funding), which can be accessed upon application. However, uptake of the payment among EIBSS beneficiaries and their family members has been very low, and the reasons for this are unclear. There is lack of robust evidence on the needs for psychological support among those infected and affected by infected blood and blood products. The need for this evidence has become more urgent with the Inquiry concluding in autumn 2023. This study was commissioned to help fill this evidence gap and to inform and consider options for improving the existing offer of psychological support services for infected and affected people. APPROACH We conducted in-depth interviews with 52 infected and affected people and 14 mental health practitioners and experts to understand these needs and explore possible service improvements. Interview participants came from a fairly broad age range and across regions in England, although there were a larger number of women and people identifying as White British than would reflect the UK population. Interviews were conducted between January and May 2023. PRINCIPAL FINDINGS: The infected blood scandal had, and continues to have, a profound impact on the mental health and wellbeing of infected and affected people. Study participants shared multiple accounts of grief and loss, anger, fear and anxiety, guilt, and facing stigma, isolation and discrimination because of infection. About half of the people who participated in the study explicitly said they had experienced trauma, and most described incidents that have caused them significant distress. Additionally, many participants described further long-term ill health linked to the side-effects of their infection(s) and their treatments, which many described as having life-changing impacts on their wellbeing. Affected people also reported very significant impacts of their loved one’s infection on their own wellbeing, including profound emotional and financial consequences of bereavement. Only some of those interviewed for this study had been able to access and use psychological support services for their mental health over the years, and only just over half of the study participants were aware of EIBSS payments for psychological support. Some participants only learnt about the availability of the EIBSS discretionary payment during the research interview. Identified barriers that prevented people from accessing counselling and psychological support included social and personal issues, such as feeling unable to open up, stigma 2 of NHS-supplied blood transfusions and blood products, and for affected families – Final report through encounters with the wider health system; study participants reported instances of discrimination in healthcare settings, which made it even more difficult for people to seek professional help. Only a very small number of people found the EIBSS payment scheme for psychological support easy to work through. Most described this route as requiring substantial effort, and being physically and mentally unwell further exacerbated these experiences. Study participants described feeling burdened by the application process and reported that finding a competent and suitable practitioner was often difficult. There is a substantial need for psychological support in the infected and affected communities, and this need is likely to increase once the Inquiry concludes. Practitioners working with infected and affected people cited instances where the Inquiry had already impeded the progress of clients working towards improving their mental health outcomes. Conclusions Existing psychological support services in England – whether accessed through the NHS or privately – do not currently meet the needs of infected and affected communities. Access to psychological support that is effective and experienced as tailored to an individual’s needs is not common and finding the right match between client and therapist is often down to chance. Accordingly, a future improved psychological support service should: • involve infected and affected people with a range of experiences in the development and design of the psychological support service; • address the substantial distrust in and legacy of EIBSS and the wider health system to provide an effective service; • be offered as standard to all individuals known to be infected or affected, and not just upon application; • be proactive, reaching out to and encouraging individuals to take up support; • be accessible through various routes with self-referral important to empower people and reduce access barriers; • be inclusive and broadened to a wider group of affected people than is currently the case; • be flexible and agile, allowing infected and affected people to access the service when they need it and re-enter it without additional administrative burdens for them; • be compassionate, respectful of its clients and non-judgemental. • be set in a specialist setting, include assessment, and offer individual therapy as well as peer support; • offer a range of therapeutic modalities and delivery modes (in-person, online, telephone); • work with adequately qualified, accredited and registered practitioners who have experience of working with trauma-affected populations, understand long-term health conditions that impact mental health and vice versa, and, importantly, have sensitivity to, and knowledge about the infected blood scandal, and related conditions including but not limited to HIV and hepatitis C. The service should be of high quality, with appropriate mechanisms for oversight and accountability. It should be embedded in a wider support system that is proactive, so that those who face the highest barriers or who are most vulnerable are still able to engage and benefit from this support service. This includes the creation of a single contact point or person (a navigator) who assists individuals to navigate the health and social care system more effectively. A service that ‘does the work’ by proactively reaching out to infected and affected people was seen as an important way in which the government could begin to address the harm it caused

What are the current and projected future cost and health-related quality of life implications of scaling up cognitive stimulation therapy?

Objectives: Cognitive stimulation therapy (CST) is one of the few non-pharmacological interventions for people living with dementia shown to be effective and cost-effective. What are the current and future cost and health-related quality of life implications of scaling-up CST to eligible new cases of dementia in England? Methods/design: Data from trials were combined with microsimulation and macrosimulation modelling to project future prevalence, needs and costs. Health and social costs, unpaid care costs and quality-adjusted life years (QALYs) were compared with and without scaling-up of CST and follow-on maintenance CST (MCST). Results: Scaling-up group CST requires year-on-year increases in expenditure (mainly on staff), but these would be partially offset by reductions in health and care costs. Unpaid care costs would increase. Scaling-up MCST would also require additional expenditure, but without generating savings elsewhere. There would be improvements in general cognitive functioning and health-related quality of life, summarised in terms of QALY gains. Cost per QALY for CST alone would increase from £12,596 in 2015 to £19,573 by 2040, which is below the threshold for cost-effectiveness used by the National Institute for Health and Care Excellence (NICE). Cost per QALY for CST and MCST combined would grow from £19,883 in 2015 to £30,906 by 2040, making it less likely to be recommended by NICE on cost-effectiveness grounds. Conclusions: Scaling-up CST England for people with incident dementia can improve lives in an affordable, cost-effective manner. Adding MCST also improves health-related quality of life, but the economic evidence is less compelling

The worldwide costs of dementia in 2019

Introduction: Dementia is a leading cause of death and disability globally. Estimating total societal costs demonstrates the wide impact of dementia and its main direct and indirect economic components. Methods: We constructed a global cost model for dementia, presenting costs as cumulated global and regional costs. Results: In 2019, the annual global societal costs of dementia were estimated at US $1313.4 billion for 55.2 million people with dementia, corresponding to US$23,796 per person with dementia. Of the total, US $213.2 billion (16$448.7 billion (34%) direct social sector costs (including long-term care), and US $651.4 billion (50$1313.4 in 2019. Sixty-one percent of people with dementia live in low-and middle-income countries, whereas 74% of the costs occur in high-income countries. The impact of informal care accounts for about 50% of the global costs. The development of a long-term care infrastructure is a great challenge for low-and middle-income countries. There is a great need for more cost studies, particularly in low- and middle-income countries. Discussions of a framework for global cost comparisons are needed

Beginning to explore the experience of managing a direct payment for someone with dementia: The perspectives of suitable people and adult social care practitioners

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

Data from: Mindfulness online: a preliminary evaluation of the feasibility of a web-based mindfulness course and the impact on stress

OBJECTIVES: Stress has been shown to have a number of negative effects on health over time. Mindfulness interventions have been shown to decrease perceived stress but access to interventions is limited. Therefore, the effectiveness of an online mindfulness course for perceived stress was investigated. DESIGN: A preliminary evaluation of an online mindfulness course. PARTICIPANTS: This sample consisted of 100 self-referrals to the online course. The average age of participants was 48 years and 74% were women. INTERVENTIONS: The online programme consisted of modules taken from Mindfulness Based Stress Reduction and Mindfulness Based Cognitive Therapy and lasted for approximately 6 weeks. PRIMARY AND SECONDARY OUTCOME MEASURES: Participants completed the Perceived Stress Scale (PSS) before the course, after the course and at 1-month follow-up. Completion of formal (eg, body scan, mindful movement) and informal (eg, mindful meal, noticing) mindfulness activities was self-reported each week. RESULTS: Participation in the online mindfulness course significantly reduced perceived stress upon completion and remained stable at follow-up. The pre-post effect size was equivalent to levels found in other class-based mindfulness programmes. Furthermore, people who had higher PSS scores before the course reported engaging in significantly more mindfulness practice, which was in turn associated with greater decreases in PSS. CONCLUSIONS: Because perceived stress significantly decreased with such limited exposure to mindfulness, there are implications for the accessibility of mindfulness therapies online. Future research needs to evaluate other health outcomes for which face-to-face mindfulness therapies have been shown to help, such as anxiety and depressive symptoms