An exploratory randomised trial investigating feasibility, potential impact and cost effectiveness of link workers for people living with multimorbidity attending general practices in deprived urban communities.

BACKGROUND: Social prescribing link workers are non-health or social care professionals who connect people with psychosocial needs to non-clinical community supports. They are being implemented widely, but there is limited evidence for appropriate target populations or cost effectiveness. This study aimed to explore the feasibility, potential impact on health outcomes and cost effectiveness of practice-based link workers for people with multimorbidity living in deprived urban communities. METHODS: A pragmatic exploratory randomised trial with wait-list usual care control and blinding at analysis was conducted during the COVID 19 pandemic (July 2020 to January 2021). Participants had two or more ongoing health conditions, attended a general practitioner (GP) serving a deprived urban community who felt they may benefit from a one-month practice-based social prescribing link worker intervention.. Feasibility measures were recruitment and retention of participants, practices and link workers, and completion of outcome data. Primary outcomes at one month were health-related quality of life (EQ-5D-5L) and mental health (HADS). Potential cost effectiveness from the health service perspective was evaluated using quality adjusted life years (QALYs), based on conversion of the EQ-5D-5L and ICECAP-A capability index to utility scoring. RESULTS: From a target of 600, 251 patients were recruited across 13 general practices. Randomisation to intervention (n = 123) and control (n = 117) was after baseline data collection. Participant retention at one month was 80%. All practices and link workers (n = 10) were retained for the trial period. Data completion for primary outcomes was 75%. There were no significant differences identified using mixed effects regression analysis in EQ-5D-5L (MD 0.01, 95% CI -0.07 to 0.09) or HADS (MD 0.05, 95% CI -0.63 to 0.73), and no cost effectiveness advantages. A sensitivity analysis that considered link workers operating at full capacity in a non-pandemic setting, indicated the probability of effectiveness at the €45,000 ICER threshold value for Ireland was 0.787 using the ICECAP-A capability index. CONCLUSIONS: While the trial under-recruited participants mainly due to COVID-19 restrictions, it demonstrates that robust evaluations and cost utility analyses are possible. Further evaluations are required to establish cost effectiveness and should consider using the ICE-CAP-A wellbeing measure for cost utility analysis. REGISTRATION: This trial is registered on ISRCTN. TITLE: Use of link workers to provide social prescribing and health and social care coordination for people with complex multimorbidity in socially deprived areas. TRIAL ID: ISRCTN10287737. Date registered 10/12/2019. Link: https://www.isrctn.com/ISRCTN10287737.

Primary care-based link workers providing social prescribing to improve health and social care outcomes for people with multimorbidity in socially deprived areas (the LinkMM trial): Pilot study for a pragmatic randomised controlled trial.

INTRODUCTION: Individuals with multimorbidity in deprived areas experience worse health outcomes and fragmented care. Research suggests that primary care-based link workers providing social prescribing have potential to improve health and well-being. This paper reports the results of a pilot study conducted in preparation for a randomised controlled trial (RCT) that aims to test the effectiveness of primary care-based link workers providing social prescribing in improving health outcomes for people with multimorbidity who attend general practices in deprived areas in Ireland. METHODS: An uncontrolled pilot study of an intervention based on the Glasgow Deep End links worker programme, in a single general practice, tested the feasibility and acceptability of planned processes for a RCT. Outcomes were recruitment and retention rates and acceptability of the trial processes and intervention to patients, general practitioners (GPs) and the link worker. Structured interviews were conducted with six patients, the link worker and two GPs within the practice and analysed using descriptive qualitative analysis. Feedback from a Public Patient Involvement group and an Implementation Advisory Group of key stakeholders was incorporated into the evaluation process. RESULTS: Twelve out of 14 patients completed the intervention. Selection and recruitment processes were lengthier than expected. GPs recommended including psychosocial need in the selection process. Interviewed patients, the GPs and the link worker were positive about the intervention. CONCLUSION: A range of adaptations were identified for the main trial, mainly considering psychosocial need in the selection process to reflect normal referral pathways. This has resulted in a pragmatic RCT design.

Key stakeholders' experiences of respite services for people with dementia and their perspectives on respite service development: a qualitative systematic review.

BACKGROUND: Respite services provide a break in the caregiving relationship for people with dementia and their carers, however they are often under-used and service acceptability can be low. This study aims to understand key stakeholders' experiences of respite services for people with dementia, with a view to informing respite service development. METHODS: A systematic search was conducted of the Pubmed/MedLine, Embase, Cinahl, PsychInfo, Scopus, Web of Science, and Cochrane databases (1980-2016, English) with fixed search terms relating to 'respite' and 'dementia', following PRISMA guidelines. Noblit and Hare's approach to meta-ethnography was employed. Key concepts were identified across the papers and reciprocal and refutational translation techniques were applied to primary studies; findings were synthesized into third order interpretations and finally, a 'line-of-argument' was developed. RESULTS: In total 23 papers were reviewed, which described 20 independent samples across 12 countries. The views of 889 participants were synthesized (13 people with dementia, 690 carers, 44 'service providers', 52 frontline staff, 70 managers, 12 volunteers, six academic/policy-makers, and two independent consultants). Five key concepts were identified and outlined i.e. 1) the transition to service use 2) expanding organizational capacity 3) dementia care quality 4) building a collaborative care partnership and 5) dyad restoration. There was broad agreement around the key areas for service development across the range of stakeholders (flexible and responsive person-centred care, meaningful activity for people with dementia, enhanced client-service communication and informational support). However, there was clear divergence in stakeholder perspectives around the barriers to implementation of such developments. Organizational tension was evident between frontline staff and management in respite services, hindering the cultural change necessary to facilitate service development in line with dyad's needs and preferences. CONCLUSION: Respite services must surmount internal organizational barriers to change, and cultivate a collaborative solution-focused care culture, which acknowledges the centrality of the dyad and their care preferences. Future research should explore the development of alternative/modified community respite service models, which have greater capacity to be responsive to the needs of each individual dyad. The perspectives of people with dementia must be included in research in this area going forward. TRIAL REGISTRATION: PROSPERO Registration Number: CRD42016050191 .

Determinants of quality of life for older people living with a disability in the community.

AIM: This paper is a report of a study conducted to identify the determinants of quality of life for older people with a disability living in the community and to construct a model to explain these. BACKGROUND: There is no consensus in the literature as to the meaning of quality of life. Few studies have focused on the determinants of quality of life for people with a disability. METHODS: A grounded theory study was conducted between 2005 and 2006, using semi-structured interviews to collect data. The constant comparative technique was used to analyse data. The sample comprised 122 older people with one of six disabilities: stroke (n = 20), arthritis (20), depression (20), vision and hearing deficits (20), learning disability (24) or dementia (18) who were living in the community. FINDINGS: A model of the factors that determine quality of life of older people with a disability was developed. 'Living well' was conceptualized as the core category. The potential to 'live well' was influenced by foundation, mediating and facilitating/constraining factors. Quality of life of older people with a disability was revealed as a complex mix of these factors. CONCLUSION: Quality of life cannot be fully understood unless the totality of factors that have an impact on and shape perceptions are taken into account. The model implies that good support from nurses, a focus on a person's abilities and access to information and connectedness to others can make a difference and may help people cope in a better way.

Quality of life for older people living in long-stay settings in Ireland.

AIM: The aim of this study was to explore the quality of life of older people living in long-stay care in Ireland from the perspectives of residents and staff. BACKGROUND: While the literature on quality of life is complex, several areas of agreement are evident. Quality of life is a multi-dimensional concept, which cannot be explained solely in medical terms and only makes sense if presented in an holistic context. Quality of life contains both subjective and objective elements; therefore, there is a need to take account of both when measuring the concept. METHOD: A mixed method research design was selected for this study. Three methods were employed; focus groups (n = 7) a quantitative survey of 526 long-stay facilities and qualitative interviews with 101 residents and 48 staff. RESULTS: The findings revealed four thematic domains of quality of life: care environment and ethos of care, personal identity, connectedness to family and community and activities and therapies. CONCLUSION: The study found that there were differences in resident experiences across care study sites and important differences in staffing provision, skill mix and physical environment between private and public facilities. Several factors were also found that either enhanced or diminished residents' potential to retain their connections and relationships with other people. Finally, residents were most likely to participate in activities which were designed to take into account their own particular interests. RELEVANCE TO CLINICAL PRACTICE: This study articulates domains of quality of life from the perspective of residents and staff and gives support to the claims that management and organizational structures within long-stay care facilities matter for quality of life. Clear identification of what is important to older people is important as services need to be shaped around quality of life as much as quality of care, notwithstanding the close relationship between the two.