The Lived Experience of Informal Caregivers of People Who Have Severe Mental Illness and Coexisting Long-Term Conditions: A Qualitative Study.

BACKGROUND: People with severe mental illness (SMI) experience higher rates and poorer outcomes of physical long-term conditions (LTCs). The management of SMI and LTCs is highly complex and many people with SMI rely on informal carers for support, which may lead to high levels of caregiver burden, and caregiver burnout. Caregiver burnout can result in poor health outcomes for informal carers and a reduction in the quality of care they are able to provide. Therefore, it is important to understand the caring experience to identify and address factors that contribute to burden and burnout. METHODS: This paper reports a secondary qualitative analysis of semistructured interviews and focus groups conducted with informal carers of people who have coexisting SMI and LTCs. We recruited 12 informal carers in England between December 2018 and April 2019. The transcripts were coded and analysed thematically. RESULTS: We identified two overarching themes and five subthemes. The themes included 'Fighting on all fronts: Mounting strain between demands and resources', which described the challenge of providing care in the context of coexisting SMI and LTCs, and 'Safekeeping: The necessity of chronic hypervigilance', which captured how informal carers' roles were defined by managing high-risk situations, leading to hypervigilance and paternalistic approaches to care. CONCLUSION: The experience of informal carers for people with SMI and coexisting LTCs is marked by limited access to support and the management of significant risk, which could contribute to high caregiver burden. Further primary research is needed to understand how the experiences of the caregiver role for people with SMI and LTCs influence caregiver burden. PATIENT OR PUBLIC CONTRIBUTION: Our PPI panel DIAMONDS Voice provided guidance on this study from conception, design and development of interview guides and recruitment materials to final write-up. DIAMONDS Voice consists of service users and carers who have experience of SMI and LTCs. Three carer members reviewed the final manuscript, and two are credited as authors.

The lived experience of severe mental illness and long-term conditions: a qualitative exploration of service user, carer, and healthcare professional perspectives on self-managing co-existing mental and physical conditions.

BACKGROUND: People with severe mental illness (SMI), such as schizophrenia, have higher rates of physical long-term conditions (LTCs), poorer health outcomes, and shorter life expectancy compared with the general population. Previous research exploring SMI and diabetes highlights that people with SMI experience barriers to self-management, a key component of care in long-term conditions; however, this has not been investigated in the context of other LTCs. The aim of this study was to explore the lived experience of co-existing SMI and LTCs for service users, carers, and healthcare professionals. METHODS: A qualitative study with people with SMI and LTCs, their carers, and healthcare professionals, using semi-structured interviews, focused observations, and focus groups across the UK. Forty-one interviews and five focus groups were conducted between December 2018 and April 2019. Transcripts were coded by two authors and analysed thematically. RESULTS: Three themes were identified, 1) the precarious nature of living with SMI, 2) the circularity of life with SMI and LTCs, and 3) the constellation of support for self-management. People with co-existing SMI and LTCs often experience substantial difficulties with self-management of their health due to the competing demands of their psychiatric symptoms and treatment, social circumstances, and access to support. Multiple long-term conditions add to the burden of self-management. Social support, alongside person-centred professional care, is a key facilitator for managing health. An integrated approach to both mental and physical healthcare was suggested to meet service user and carer needs. CONCLUSION: The demands of living with SMI present a substantial barrier to self-management for multiple co-existing LTCs. It is important that people with SMI can access person-centred, tailored support for their LTCs that takes into consideration individual circumstances and priorities.

Effectiveness of interventions to support the early detection of skin cancer through skin self-examination: a systematic review and meta-analysis.

BACKGROUND: As skin cancer incidence rises, there is a need to evaluate early detection interventions by the public using skin self-examination (SSE); however, the literature focuses on primary prevention. No systematic reviews have evaluated the effectiveness of such SSE interventions. OBJECTIVES: To systematically examine, map, appraise and synthesize, qualitatively and quantitatively, studies evaluating the early detection of skin cancer, using SSE interventions. METHODS: This is a systematic review (narrative synthesis and meta-analysis) examining randomized controlled trials (RCTs) and quasiexperimental, observational and qualitative studies, published in English, using PRISMA and National Institute for Health and Care Excellence guidance. The MEDLINE, Embase and PsycINFO databases were searched through to April 2015 (updated in April 2018 using MEDLINE). Risk-of-bias assessment was conducted. RESULTS: Included studies (n = 18), totalling 6836 participants, were derived from 22 papers; these included 12 RCTs and five quasiexperiments and one complex-intervention development. More studies (n = 10) focused on targeting high-risk groups (surveillance) than those at no higher risk (screening) (n = 8). Ten (45%) study interventions were theoretically underpinned. All of the study outcomes were self-reported, behaviour related and nonclinical in nature. Meta-analysis demonstrated the impact of the intervention on the degree of SSE activity from five studies, especially in the short term (up to 4 months) (odds ratio 2·31, 95% confidence interval 1·90-2·82), but with small effect sizes. Risk-of-bias assessment indicated that 61% of the studies (n = 11) were of weak quality. CONCLUSIONS: Four RCTs and a quasiexperimental study indicate that some interventions can enhance SSE activity and so are more likely to aid early detection of skin cancer. However, the actual clinical impact remains unclear, and this is based on overall weak study (evidence) quality.

Social patterning in knowledge following an informed choice invitation for type 2 diabetes screening.

AIMS: To describe prevalence of knowledge of items specified by the U.K. General Medical Council as required to make an informed choice following an invitation for screening for type 2 diabetes and investigate whether knowledge was socio-economically patterned. METHODS: A 9-item knowledge questionnaire was employed immediately following an informed choice invitation to type 2 diabetes screening that was piloted with 278 people between 40 and 69 years in the U.K. between February and April 2006. RESULTS: With the exception of post-diagnosis treatment and the effectiveness of early treatment in preventing long-term problems, information was typically understood correctly. Social patterning was observed: individuals who left full-time education before 19 years of age were less likely to understand the most likely test result, the effectiveness of early treatment in preventing long-term problems or the possible harms of screening. CONCLUSIONS: Even risk communication materials developed for ease of readability can result in inequity, limiting autonomy in healthcare decisions.

Can informed choice invitations lead to inequities in intentions to make lifestyle changes among participants in a primary care diabetes screening programme? Evidence from a randomized trial.

OBJECTIVE: To test whether information about benefits and harms of screening for type 2 diabetes increases intentions to make lifestyle changes amongst attenders, predominantly among the socially advantaged and those with a strong future time orientation. STUDY DESIGN: Planned subgroup analysis of attenders for screening participating in a randomized controlled trial of an informed choice invitation vs a standard invitation to attend for type 2 diabetes screening. METHODS: Potentially eligible participants were identified from practice registers using routine data which were used to calculate risk scores for diabetes for all aged 40-69 years without known type 2 diabetes and area deprivation based on post code. In total, 1272 individuals in the top 25% risk category were randomized to receive one of two invitations to attend their practices for screening: an informed choice invitation or a standard invitation. The subsequent attenders completed self-report measures of future time orientation and deprivation immediately before undergoing a screening test. RESULTS: Individual-level deprivation demonstrated a significant moderator effect [F (4,635) = 4.32, P = 0.002]: individuals who were high in deprivation had lower intentions to engage in lifestyle change following receipt of the informed choice invitation. However, intentions were not patterned by deprivation when it was assessed at the area-level using the Index of Multiple Deprivation 2007. The hypothesized moderating effect of future time orientation on invitation type was also supported [F(14,613) = 2.46, P = 0.002): individuals low in future time orientation had markedly lower intentions to engage in lifestyle change following receipt of an informed choice invitation compared with a standard invitation for screening. CONCLUSION: Efforts to enhance informed choice where the implications of diagnosis are a requirement for lifestyle change may require that the immediate benefits are communicated, and efforts to address the apparent barriers to diabetes self-care are made, if the potential for inequity is to be avoided.

Attentional bias modification for acute experimental pain: A randomized controlled trial of retraining early versus later attention on pain severity, threshold and tolerance.

BACKGROUND: Noxious attentional bias is thought to confer vulnerability to pain, suggesting that modifying the bias could reduce pain outcomes. Herein is presented a randomized controlled trial to test the effects of retraining the dot probe attentional bias at short versus long stimulus durations towards neutral stimuli, and away from threat stimuli, on acute pain experience, in comparison with a placebo control group. METHODS: Eighty-one pain-free volunteers, blinded to condition, were randomized to complete either one of two neutral bias modification programs in which words were presented for 500 ms (ABM-500; n = 28) or 1250 ms (ABM-1250; n = 26), or to a sham training program that included both stimulus durations (ABM-Placebo; n = 27). Testing took place in a university laboratory. At post-training, participants completed the pain-inducing 'cold pressor task', and measures of pain severity, threshold and tolerance were taken. Attentional bias was also measured at pre- and post-training. RESULTS: Findings indicated that ABM-500 reliably increased pain threshold and tolerance, in comparison with the control group. In contrast, ABM-1250 did not affect any of the pain outcomes. Expected ABM effects on attentional bias were not evident at the group level, but nevertheless ABM-500 bias reduction was significantly associated with increased pain tolerance. CONCLUSIONS: These findings suggest that retraining attention at short stimulus exposure durations is relatively more efficacious in promoting transfer of attentional retraining effects to real-world acute pain stressors, in comparison with both the longer stimulus duration and ABM-Placebo. SIGNIFICANCE: Testing of the impact of modifying maintained attentional bias on vulnerability to an acute pain stressor. Findings suggested that retraining rapid attentional bias using short exposure durations conferred greater analgesic benefit, in comparison with both the slower bias and sham-training.