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

Managers’ views of skilled support

Background: Quality of life of people with intellectual and developmental disabilities has been found to primarily depend on whether staff are providing facilitative and enabling support that helps to compensate for severity of disability. Managers have a key role in facilitating staff to provide such support. Method: Qualitative interviews were conducted with 35 managers of supported accommodation services to explore service aims and the nature of, and challenges in providing, skilled support. Key themes were identified using a Thematic Networks Analysis. Results: Service aims were rarely formalised, were related to the individuals supported and not to the organisation. Managers found it difficult to define skilled support, other than by reference to individuals. Practice leadership roles were challenged as a result of austerity measures. Conclusions: Front?line managers need more information and training in skilled support, with stronger leadership from senior management to provide the motivation and resources needed

Redefining Self‐Advocacy: A Practice Theory‐Based Approach

The disabled people's movements have successfully influenced public policies and laws. Self‐advocates who are autistic or have an intellectual disability have been working alongside other advocates for recent decades. Practice theory has rarely been used in disability research. This study explores “practice theory” through the analysis of interviews with advocates and self‐advocates within the autism and intellectual disability advocacy movements. This is a qualitative, empirical study based on interviews and focus groups with 43 participants in two countries. The data were collected in 2016–17. Content analysis was used to identify themes. Data indicate that everyday practices of self‐advocates and advocates such as parent advocates and professional advocates largely overlap. There are five major types of practices that are done by nearly all advocates: “informing and being informed,” “using media,” “supporting each other,” “speaking up,” and “bureaucratic duties.” Contrary to several previous studies on self‐advocacy that emphasized “speaking up” as the main activity in advocacy, this study found that most practices of advocates and self‐advocates are “para‐advocacy” practices that may or may not lead directly to “speaking up.” Practices of self‐advocates are often embedded in other everyday activities people do. The line between practices that belong to self‐advocacy and practices outside self‐advocacy may not always be clear even to self‐advocates. Findings also indicate that hierarchies in the disability movement influence strongly the position of self‐advocates

New observations on Saturnella saturnus (Steinecke) Fott: the first British record of a little-known enigmatic ‘green’ alga

Saturnella saturnus was discovered in March 2014 in open-water pools on blanket peatland at the Moor House - Upper Teesdale National Nature Reserve, straddling Cumbria and County Durham in NE England. This is the first record for the British Isles of a little-known alga known previously only from a few peat bog areas, mainly in mainland Europe. The literature is reviewed and new observations presented on its morphology and reproduction based on LM examination of living cells. New observations on the chloroplast structure and cytoplasmic inclusions (especially oil droplets) are discussed in relation to the findings of earlier studies. Doubt attaches as whether it is a chlorophyte or a xanthophyte and the identity of small spherical inclusions that have been frequently interpreted as autospores. It occurs in Upper Teesdale in pools that are that are small, relatively newly formed and mostly well-oxygenated. Also discussed is its relationship to Trochiscia, another coloniser of peatland pools. Photographic images are presented for the first time and comments made on its ecology in the context of blanket bog conservation projects and apparent rarity

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

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

Outcomes and costs of skilled support for people with severe or profound intellectual disability and complex needs

Background With increasing reductions in funding for social care across many countries, the need to ensure that resources are used to best effect is becoming increasingly important, in particular for those with severe and complex needs. Methods In order to explore the outcomes and costs of skilled support for this group of people, quality of life was assessed for 110 people in 35 services in England. Information on costs was also collected. Results People who received consistently good active support experienced better outcomes in terms of several quality of life domains. Good support did not require significantly more staff time, and there was no evidence of higher total costs for those receiving good support. Conclusions The inclusion of active support in government guidance and local commissioning practices related to people with severe intellectual disabilities is likely to improve user outcomes. Observation should be an important element in measuring service quality

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