Use of quality information in decision-making about health and social care services - a systematic review

User choice and personalisation have been at the centre of health and social care policies in many countries. Exercising choice can be especially challenging for people with long-term conditions (LTC) or disabilities. Information about the quality, cost and availability of services is central to user choice. This study used systematic review methods to synthesise evidence in three main areas: (i) how people with LTC or disabilities and their family carers ?nd and access information about the quality of services; (ii) how quality information is used in decision-making; and (iii) what type of quality information is most useful. Quality information was de?ned broadly and could include formal quality reports (e.g. inspection reports, report cards, etc.), information about the characteristics of a service or provider (e.g. number and quali?cations of staff, facilities, etc.) and informal reports about quality (e.g. personal experience, etc.). Literature searches were carried out using electronic databases in January 2012. Thirteen papers reporting ?ndings from empirical studies published between 2001 and 2012 were included in the review. The majority of papers (n = 9) had a qualitative design. The analysis highlighted the use of multiple sources of information in decision-making about services and in particular the importance of informal sources and extended social networks in accessing information. There is limited awareness and use of ‘of?cial’ and online information sources. Service users or family carers place greater emphasis on general information and structural indicators. Clinical or quality-of-life outcomes are often dif?cult to interpret and apply. Trust emerged a key issue in relation to quality information. Experiential and subjective information is highly valued and trusted. Various barriers to the effective use of quality information in making choices about services are identi?ed. Implications for policy and future research are discussed

Desinstitucionalización y vida en la comunidad. Declaración del Grupo de Investigación sobre Política y Práctica Comparativas, de la Asociación Internacional para el Estudio Científico de las Discapacidades Intelectuales (IASSID)

Los servicios sociales comunitarios para personas con discapacidad garantizan una mayor calidad de vida que los centros residenciales, y no son más costosos. Éstas son las principales conclusiones de un análisis que ha recibido el respaldo de la Asociación Internacional para el Estudio Científico de las Discapacidades Intelectuales (IASSID), que examina –a partir de artículos de síntesis– la literatura científica que compara la eficacia de los servicios comunitarios frente a los grandes centros residenciales en lo que al bienestar de las personas con discapacidad se refiere. Y el resultado no deja lugar a dudas: “una y otra vez, los estudios han mostrado que los servicios comunitarios son superiores a las instituciones”. Cuando lo que se compara son distintas modalidades de servicios comunitarios (hogares de grupo de gran tamaño, hogares de grupo de pequeño tamaño, fórmulas de vida independiente o semiindependiente), se encuentran pocas diferencias entre la vida independiente y los hogares de grupo más pequeños. Dada la relativa amplitud del corpus de investigaciones manejado, es lógico que se observen ciertas variaciones en las conclusiones de los estudios. Los autores del documento consideran que tres factores podrían explicar tales disparidades: las propias características de los residentes, el diseño de los servicios y la competencia del personal que los atiende

Predicting good Active Support for people with intellectual disabilities in supported accommodation services: Key messages for providers, consumers and regulators

Background: There is strong evidence about the effectiveness of Active Support. Recent research has established predictors of good Active Support as staff training, practice leadership, and service setting size. This paper explores features of organisational leadership and structures predictive of Active Support. Methods: Multilevel modelling with data from surveys, observations and interviews was used to identify predictors of Active Support at the levels of service users (n = 253), services (n = 71) and organisations (n = 14). Results: Good Active Support was predicted by: (1) positive staff perceptions of management, (2) prioritisation of practice and Active Support by senior managers, (3) strong management support for practice leadership, (4) organisation of practice leadership close to everyday service delivery, and (5) concentration of practice leadership with frontline management. Conclusion: These findings extend understanding of predictors of Active Support and provide indicators of service quality, with important implications for service providers, service users and those monitoring the quality of services

Quality of practice in supported accommodation services for people with intellectual disabilities: What matters at the organisational level

Background: Organisational and service level factors are identified as influencing the implementation of Active Support. The aim was to explore differences in organisational leadership and structures to identify potential relationships between these factors and the quality of Active Support in supported accommodation services. Method: Fourteen organisations participated in this mixed methods study, which generated data from interviews with senior leaders, document reviews and observations of the quality of Active Support. Results: Qualitative analyses revealed three conceptual categories. Senior leaders in organisations where at least 71% of services delivered good Active Support prioritised practice, understood Active Support, and strongly supported practice leadership. In these organisations practice leadership was structured close to every-day service delivery, and as part of front-line management. Conclusions: Patterns of coherent values, priorities and actions about practice demonstrated by senior leaders were associated with successful implementation of Active Support, rather than documented values in organisational policy or procedures

Family carers managing personal budgets for adults with learning disabilities or autism

1.1 Background: There are a growing number of people with learning disabilities and autism who access personal budgets in the form of direct payments in England. Although they are often involved in decisions about their support, personal budgets are usually managed by someone else, typically a parent. This study examined the experiences of carers who manage personal budgets for adults with learning disabilities or autism with a particular focus on the challenges of securing suitable support and implications for their own well‐being. 1.2 Methods: This was a qualitative study using a descriptive phenomenological approach to investigate the lived experiences of family carers who manage personal budgets. We conducted semi‐structured interviews with 13 family carers. Interview transcripts were thematically analysed using the framework approach. 1.3 Results: Our analysis identified five main themes. The first theme relates to why carers decide to take up a personal budget in the first place and their initial expectations. The second theme, restricted choice, highlights the difficulties in securing adequate support and services in the context of what are often described as “complex needs.” The third and fourth themes relate to the tasks involved in managing a personal budget and the challenges associated with the dual role of the carer as a parent and a “professional.” The fifth and final theme, mixed emotions, describes the impact on the subjective well‐being of carers. 1.4 Conclusions: Family carers indicated that the benefits of personal budgets outweighed the difficulties and stress inherent in managing them. They need adequate support to ensure that personal budgets deliver personalised and self‐directed support and greater well‐being, and are sustainable arrangements

Implementation of active support over time in Australia

Background: Research indicates the value of active support in achieving good outcomes across a number of quality of life domains for people with intellectual disabilities. However, implementation is not easy, and little research has explored why. We aimed to identify some of the factors that impact on implementation of active support in supported accommodation services. Methods: Data on the quality of active support, staff training and practice leadership were collected through staff questionnaires, observations and manager interviews, for between two and four years across six organisations. Results: Active support improved over time for more able people with intellectual disability, but not for people with higher support needs. There was a weak positive correlation between active support and (1) practice leadership scores, and (2) the percentage of staff reporting active support training. Conclusions: It is important to recognise the influence of practice leadership and staff training on the quality of support and ensure provision for these in funding schemes

Evaluating service users’ experiences using Talking Mats®

Purpose The purpose of this paper is to establish the effectiveness of Talking Mats® (TM) in evaluating service users’ experiences, and explore their views of the implementation of person-centred active support (PCAS). Design/methodology/approach This is a mixed-methods study, employing qualitative interviewing and observational measures. Findings Both qualitative and quantitative measures indicated inconsistent implementation of PCAS. It was possible to effectively gain participants’ views on positive and negative aspects of quality of support and quality of life, using TM, across three themes, My life, My support and Self-determination. Research limitations/implications Generalisability of the research may be limited due to the sample, and the potential for researcher and interviewer bias is acknowledged. Practical implications TM provides a mechanism that may facilitate the inclusion of the views and experiences of people with intellectual and developmental disability (PWIDD) who have limited verbal skills. Their views need to be reflected in adaptions made to PCAS. Originality/value This study included a population who are often left out of qualitative research because of the methodologies adopted. It also included older PWIDD, where there has been less research about the effectiveness of TM

Developing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT)

Background: This paper reports the experiences of developing and pre-testing an Easy Read version of the Adult Social Care Outcomes Toolkit (ASCOT) for self-report by people with intellectual disabilities. Method: The study has combined survey development and pre-testing methods with approaches to create accessible information for people with intellectual disabilities. A working group assisted researchers in identifying appropriate question formats, pictures and wording. Focus groups and cognitive interviews were conducted to test various iterations of the instrument. Results: Substantial changes were made to the questionnaire, which included changes to illustrations, the wording of question stems and response options. Conclusions: The process demonstrated the benefits of involving people with intellectual disabilities in the design and testing of data collection instruments. Adequately adapted questionnaires can be useful tools to collect information from people with intellectual disabilities in survey research; however its limitations must be recognised

Comparing costs and outcomes of supported living with group homes in Australia

Background: Supported living is perceived as more flexible than group homes for people with intellectual disability. This study identified costs and factors associated with quality of life (QOL) in supported living and compared this with group homes. Method: Thirty-one residents in supported living participated in a survey incorporating measures of service user characteristics and QOL. Participants in supported living were compared to a sample of 397 people in 96 group homes, and QOL outcomes compared for a matched sample of 29 people in supported living and group homes. Results: QOL differed little, supported living was cheaper, and 30?35% of both groups had similar support needs. Being younger, having autism, better health, family support, and participation in structured activities were associated with better outcomes in supported living. Conclusions: Supported living holds potential for group home residents, but greater support is required in domains such as health and interpersonal relationships