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Perspectives of policy and political decision makers on access to formal dementia care: expert interviews in eight European countries.

ABSTRACT: As part of the ActifCare (ACcess to Timely Formal Care) project, we conducted expert interviews in eight European countries with policy and political decision makers, or representatives of relevant institutions, to determine their perspectives on access to formal care for people with dementia and their carers.Each ActifCare country (Germany, Ireland, Italy, The Netherlands, Norway, Portugal, Sweden, United Kingdom) conducted semi-structured interviews with 4-7 experts (total N = 38). The interview guide addressed the topics "Complexity and Continuity of Care", "Formal Services", and "Public Awareness". Country-specific analysis of interview transcripts used an inductive qualitative content analysis. Cross-national synthesis focused on similarities in themes across the ActifCare countries.The analysis revealed ten common themes and two additional sub-themes across countries. Among others, the experts highlighted the need for a coordinating role and the necessity of information to address issues of complexity and continuity of care, demanded person-centred, tailored, and multidisciplinary formal services, and referred to education, mass media and campaigns as means to raise public awareness.Policy and political decision makers appear well acquainted with current discussions among both researchers and practitioners of possible approaches to improve access to dementia care. Experts described pragmatic, realistic strategies to influence dementia care. Suggested innovations concerned how to achieve improved dementia care, rather than transforming the nature of the services provided. Knowledge gained in these expert interviews may be useful to national decision makers when they consider reshaping the organisation of dementia care, and may thus help to develop best-practice strategies and recommendations.

SUBMITTER: Broda A

PROVIDER: S-EPMC5543593 | biostudies-other | 2017 Aug

REPOSITORIES: biostudies-other

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Project description:BackgroundPeople with dementia and informal carers often access formal care late in the process of dementia. The barriers and facilitators to service use from the perspectives of different stakeholders involved are not well understood. Thus, we aimed to explore the barriers and facilitators of access to and utilisation of formal care from the perspectives of people with dementia, their informal carers and health and social care professionals.MethodFocus groups with people with dementia, informal carers and professionals were conducted in eight European countries. Recruitment targeted people with dementia, informal carers with experience of formal care and professionals involved in providing (access to) formal care. Qualitative content analysis using open coding was used on a national level. Cross-national synthesis was based on the translated national reports.ResultsOverall, 55 focus groups with 261 participants were conducted, involving 51 people with dementia, 96 informal carers and 114 professionals. Sixteen categories describing barriers and facilitators were identified, referring to three global themes: Aspects related to 1) individuals involved, 2) the system or 3) overarching aspects. The attitudes and beliefs of people with dementia and their carers may have a major impact, and they often serve as barriers. Formal care was perceived as a threat to the individual independence of people with dementia and was thus avoided as long as possible. A healthcare professional serving as a constant key contact person could be an essential facilitator to overcome these barriers. Contact should be initiated proactively, as early as possible, and a trusting and consistent relationship needs to be established. Beyond that, the findings largely confirm former research and show that barriers to accessing and using formal care still exist across Europe despite a number of national and European initiatives.ConclusionFurther investigations are needed to elaborate how the concept of a key contact person could be integrated with existing case management approaches and how the independence and autonomy of people with dementia can be strengthened when formal care needs to be accessed and used. These may be meaningful facilitators regarding enhanced access to formal care for people with dementia and their families.

Project description:BackgroundRapid reviews are increasingly used by policy agencies to access relevant research in short timeframes. Despite the growing number of programmes, little is known about how rapid reviews are used by health policy agencies. This study examined whether and how rapid reviews commissioned using a knowledge brokering programme were used by Australian policy-makers.MethodsThis study used interview data to examine the use of 139 rapid reviews by health policy agencies that were commissioned between 2006 and 2015. Transcripts were coded to identify how rapid reviews were used, the type of policy processes in which they were used, what evidence of use was provided and what reasons were given when rapid reviews were not used. Fisher's exact test was used to assess variation between types of agencies.ResultsOverall, 89% of commissioned rapid reviews were used by the commissioning agencies and 338 separate instances of use were identified, namely, on average, three uses per review. Policy-makers used reviews primarily to determine the details of a policy or programme, identify priorities for future action or investment, negotiate interjurisdictional decisions, evaluate alternative solutions for a policy problem, and communicate information to stakeholders. Some variation in use was observed across agencies. Reasons for non-use were related to changes in organisational structures, resources or key personnel in the commissioning agencies, or changes in the broader political environment.ConclusionsThis study found that almost all rapid reviews had been used by the agencies who commissioned them, primarily in policy and programme development, agenda-setting, and to communicate information to stakeholders. Reviews were used mostly in instrumental and conceptual ways and there was little evidence of symbolic use. Variations in use were identified across agencies. The findings suggest that commissioned rapid reviews are an effective means of providing timely relevant research for use in policy processes and that review findings may be applied in a variety of ways.

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Perspectives of policy and political decision makers on access to formal dementia care: expert interviews in eight European countries.

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