Effectiveness of Online Programmes for Family Carers of People with Intellectual Disabilities: Systematic Review of the International Evidence Base.

This systematic literature review examines the evidence base on the effectiveness of online programmes on the mental health and well-being of family carers of people with intellectual disabilities. Databases (ERIC, Medline, PsycINFO and CINAHL) were searched for intervention studies that considered online interventions for family carers of people with intellectual disabilities. Data were extracted using standardised data extraction tools. Bias was assessed using the Cochrane risk of bias tool for randomised trials (RoB 2). Screening, extraction and assessment of bias were completed independently by two members of the research team. Given the low number of included studies and different outcomes assessed within them, it was not possible to conduct a meta-analysis; therefore, data are presented narratively. Two studies met the criteria to be included in the review. Both studies utilised a feasibility randomised controlled trial methodology. One study found a significant decrease in parental stress, while the other found a significant increase in psychological well-being. Caution must be taken in drawing firm conclusions, given the small sample sizes and low retention rates in both studies. Online programmes seem to offer potential benefits to family carers of people with intellectual disabilities. However, further investigation is needed to examine these programmes, adopting a collaborative approach with family carers.

Randomised controlled feasibility study protocol of the Carers-ID online intervention to support the mental health of family carers of people with intellectual disabilities.

BACKGROUND: Family carers play a crucial role in supporting the health and well-being of people with intellectual disabilities. Given their role and responsibilities, many family carers experience significant and ongoing stress and mental health difficulties. Programmes and interventions which provide training and support to family carers have been shown to have a positive impact on levels of stress and quality of life. However, these are often face to face which can create barriers to full participation. Online interventions have been shown to offer flexibility in delivery compared with traditional face-to-face approaches. The primary objective of this study is to determine the feasibility of delivering the Carers-ID online intervention, while the secondary outcome is improved mental health in family carers of people with intellectual disabilities. METHODS: Family carers (n = 120) will be randomised to receive the intervention (n = 60) or assigned to a wait-list control (n = 60) group. The intervention ( www.Carers-ID.com ) consists of 14 modules which cover topics including the following: promoting resilience, providing peer support, reducing anxiety, managing stress, accessing local supports and managing family conflict and information for siblings who are carers. The intervention has been co-produced with voluntary sector organisations and family carers and tested for acceptability. Primary outcomes for this study include acceptability and feasibility of the outcome measures, recruitment, participation and retention rates and effect sizes. Secondary outcomes will be completed at three time points (baseline, following intervention completion and 3 months after completion). These include the following: the Depression, Anxiety and Stress Scale, the Warwick-Edinburgh Mental Well-being Scale, the Resilience Scale and the Social Connectedness Scale Revised. Participants (n = 12) who have taken part in the intervention arm of the research will be invited to participate in semi-structured interviews as part of the process evaluation. DISCUSSION: The Carers-ID intervention provides an online resource for family carers to support their mental health and well-being and promote their resilience. It represents an affordable and accessible means of delivering such support. Testing the feasibility of the intervention and related trial procedures is required to determine whether a full-scale randomised controlled trial to evaluate the intervention's effectiveness is warranted. TRIAL REGISTRATION: ClinicalTrials.gov : NCT05737823.

Comparing mental health and mental capacity law data across borders: Challenges and opportunities.

The island of Ireland is partitioned into Northern Ireland and the Republic of Ireland. In both jurisdictions, there have been important developments in mental health and mental capacity law, and associated policies and services. This includes an emphasis on developing more comprehensive approaches to collecting data on outcomes and so there is an opportunity to align these processes to enable comparison and shared learning across the border. This article explores: legal and policy developments; international approaches to mental health outcomes; and the type of data that would be helpful to collect to better understand the use of mental health and mental capacity laws. It is argued that an inclusive strategy to developing a comprehensive, integrated and aligned approach to collecting and analysing data would benefit citizens, policy makers and professionals.

Nurse-led advance care planning with older people who have end-stage kidney disease: feasibility of a deferred entry randomised controlled trial incorporating an economic evaluation and mixed methods process evaluation (ACReDiT).

BACKGROUND: Advance Care Planning is recommended for people with end-stage kidney disease but evidence is limited. Robust clinical trials are needed to investigate the impact of advance care planning in this population. There is little available data on cost-effectiveness to guide decision makers in allocating resources for advance care planning. Therefore we sought to determine the feasibility of a randomised controlled trial and to test methods for assessing cost-effectiveness. METHODS: A deferred entry, randomised controlled feasibility trial, incorporating economic and process evaluations, with people with end-stage kidney disease, aged 65 years or older, receiving haemodialysis, in two renal haemodialysis units in Northern Ireland, UK. A nurse facilitator helped the patient make an advance care plan identifying: a surrogate decision-maker; what the participant would like to happen in the future; any advance decision to refuse treatment; preferred place of care at end-of-life. RESULTS: Recruitment lasted 189 days; intervention and data collection 443 days. Of the 67 patients invited to participate 30 (45%) declined and 36 were randomised to immediate or deferred advance care plan groups. Twenty-two (61%) made an advance care plan and completed data collection at 12 weeks; 17 (47.2%) were able to identify a surrogate willing to be named in the advance care plan document. The intervention was well-received and encouraged end-of-life conversations, but did not succeed in helping patients to fully clarify their values or consider specific treatment choices. There was no significant difference in health system costs between the immediate and deferred groups. CONCLUSIONS: A trial of advance care planning with participants receiving haemodialysis is feasible and acceptable to patients, but challenging. A full trial would require a pool of potential participants five times larger than the number required to complete data collection at 3 months. Widening eligibility criteria to include younger (under 65 years of age) and less frail patients, together with special efforts to engage and retain surrogates may improve recruitment and retention. Traditional advance care planning outcomes may need to be supplemented with those that are defined by patients, helping them to participate with clinicians in making medical decisions. TRIAL REGISTRATION: Registered December 16, 2015. ClinicalTrials.gov Identifier: NCT02631200 .

Adapting Digital Social Prescribing for Suicide Bereavement Support: The Findings of a Consultation Exercise to Explore the Acceptability of Implementing Digital Social Prescribing within an Existing Postvention Service.

This paper describes a consultation exercise to explore the acceptability of adapting digital social prescribing (DSP) for suicide bereavement support. Bereavement by suicide increases the risk of suicide and mental health issues. Social prescribing improves connectedness and empowerment and can provide digital outcomes-based reporting to improve the capacity for measuring the effectiveness of interventions. Our aim was to consult on the acceptability and potential value of DSP for addressing the complexities of suicide bereavement support. Our approach was underpinned by implementation science and a co-design ethos. We reviewed the literature and delivered DSP demonstrations as part of our engagement process with commissioners and service providers (marrying evidence and context) and identified key roles for stakeholders (facilitation). Stakeholders contributed to a co-designed workshop to establish consensus on the challenges of providing postvention support. We present findings on eight priority challenges, as well as roles and outcomes for testing the feasibility of DSP for support after suicide. There was a consensus that DSP could potentially improve access, reach, and monitoring of care and support. Stakeholders also recognised the potential for DSP to contribute substantially to the evidence base for postvention support. In conclusion, the consultation exercise identified challenges to facilitating DSP for support after suicide and parameters for feasibility testing to progress to the evaluation of this innovative approach to postvention.

Improving mental health pathways and care for adolescents in transition to adult services (IMPACT): a retrospective case note review of social and clinical determinants of transition.

BACKGROUND: Poor transitions to adult care from child and adolescent mental health services may increase the risk of disengagement and long-term negative outcomes. However, studies of transitions in mental health care are commonly difficult to administer and little is known about the determinants of successful transition. The persistence of health inequalities related to access, care, and outcome is now well accepted including the inverse care law which suggests that those most in need of services may be the least likely to obtain them. We sought to examine the pathways and determinants of transition, including the role of social class. METHOD: A retrospective systematic examination of electronic records and case notes of young people eligible to transition to adult care over a 4-year period across five Health and Social Care NHS Trusts in Northern Ireland. RESULTS: We identified 373 service users eligible for transition. While a high proportion of eligible patients made the transition to adult services, very few received an optimal transition process and many dropped out of services or subsequently disengaged. Clinical factors, rather than social class, appear to be more influential in the transition pathway. However, those not in employment, education or training (NEET) were more likely (OR 3.04: 95% CI 1.34, 6.91) to have been referred to Adult Mental Health Services (AMHS), as were those with a risk assessment or diagnosis (OR 4.89: 2.45, 9.80 and OR 3.36: 1.78, 6.34), respectively. CONCLUSIONS: Despite the importance of a smoother transition to adult services, surprisingly, few patients experience this. There is a need for stronger standardised policies and guidelines to ensure optimal transitional care to AMHS. The barriers between different arms of psychiatry appear to persist. Joint working and shared arrangements between child and adolescent and adult mental health services should be fostered.