Providing Legal Information and Advice to Older People: as much a question of accessibility as affordability

No continent has as high a proportion of older people as Europe. In this paper, we report the findings of an empirical project examining the legal advice needs of older people. An important element of the project also sought information about the capacity of the internet for meeting the legal advice needs of older people. Overall our findings broadly indicate considerable failings in legal information provision for older people from more traditional advice sources. Whilst we have uncovered some examples of individualised good practice, our research in the main revealed an alarming sense of fear, mistrust, uncertainty and ambivalence among older people towards accessing legal advice. The research was funded by the Changing Ageing Partnership (CAP). We believe our findings have broad implications and applicability across Europe.

Measuring non-use value of environmental goods using the contingent valuation method:problems of information and cognition and the application of cognitive questionnaire design methods

Much interest now focuses on the use of the contingent valuation method (CVM) to assess non-use value of environmental goods. The paper reviews recent literature and highlights particular problems of information provision and respondent knowledge, comprehension and cognition. These must be dealt with by economists in designing CVM surveys for eliciting non-use values. Cognitive questionnaire design methods are presented which invoke concepts from psychology and tools from cognitive survey design (focus groups and verbal reports) to reduce a complex environmnetal good into a meaningful commodity that can be valued by respondents in a contingent market. This process is illustrated with examples from the authors' own research valuing alternative afforestation programmes. -Authors

Using the opinions of coronary heart disease patients in designing a health education booklet for use in general practice consultations.

Objective This study explored how coronary heart disease (CHD) patients’ views would inform the design of an information booklet aimed at providing patients and practitioners with a resource to help influence positively patients’ health behaviour outcomes. Methods Opinions of patients (N=23) with CHD about their information needs, particularly lifestyle advice, were explored using a qualitative approach in four general practices. This information was used in designing a booklet for a pilot study intervention aimed at promoting healthy lifestyle behaviours and medication adherence among people with CHD. Subsequent focus groups explored patients’ (N=17) opinions about the booklet’s ‘fitness for purpose’; semi-structured interviews with practitioners (N=10) examined their views on the booklet’s usefulness. Results In initial focus groups patients identified gaps in their information provision regarding coping with stress, available local community support and medication purpose. A booklet, prepared on the basis of previous literature, was modified to address these gaps. Pilot study patients were satisfied with the re-designed booklet and practitioners reported that its use in consultations enabled change implementation and facilitated patients’ understanding of connections between lifestyle and health outcomes. Conclusion Acknowledging the opinions of CHD patients in producing health information booklets which emphasised a patient centred approach supported practitioner-patient partnerships for choosing healthy lifestyle choices.

Exploring divergence between respondent and researcher definitions of the good in contingent valuation studies

In Contingent Valuation studies, researchers often base their definition of the environmental good on scientific/expert consensus. However, respondents may not hold this same commodity definition prior to the transaction. This raises questions as to the potential for staging a satisfactory transaction, based on Fischoff and Furby's (1988) criteria. Some unresolved issues regarding the provision of information to respondents to facilitate such a transaction are highlighted. In this paper, we apply content analysis to focus group discussions and develop a set of rules which take account of the non-independence of group data to explore whether researcher and respondents' prior definitions are in any way similar. We use the results to guide information provision in a subsequent questionnaire.

Implementation of European standards of care for cystic fibrosis - provision of care

Background: Several guidelines for cystic fibrosis (CF) caregivers exist, but information about their implementation is lacking.

Learning and organization in the knowledge-based information economy: Initial findings from a participatory action research case study

This paper reports on an ongoing, multiphase, project-based action learning and research project. In particular, it summarizes some aspects of the learning climate and outcomes for a case study company In the software industry, Using a participatory action research approach, the learning company framework developed by Pedler et al, (1997) is used to initiate critical reflection in the company at three levels: managing director, senior management team and technical and professional staff. As such, this is one of the first systematic attempts to apply this framework to the entire organization and to a company in the knowledge-based learning economy. Two sets of issues are of general concern to the company: internal issues surrounding the company's reward and recognition policies and practices and the provision of accounting and control information in a business relevant way to all levels of staff; and external issues concerning the extent to which the company and its members actively learn from other companies and effectively capture, disseminate and use information accessed by staff in boundary-spanning roles. The paper concludes with some illustrations of changes being introduced by the company as a result of the feedback on and discussion of these issues.

Towards Charity Accountability: Narrowing the gap between provision and needs?

Although charities currently play a rich and varied role in modern society, their continued success is dependent upon the public's trust. With respect to charity accountability, two key questions emerge: to whom is a charity accountable; and what form should that account take? Despite the widespread acceptance that charities should discharge accountability, there is limited knowledge of the relative importance of different stakeholder groups and whether the information currently being disclosed meets their needs. Using extensive document analysis and a survey of stakeholders, this research explores these issues in the context of the top 100 UK fundraising charities. Furthermore, it compares the results with much earlier research to identify changes over time.

Who is responsible?:The role of family physicians in the provision of supportive cancer care

Purpose: Patients living with cancer identify family physicians (FPs; ie, primary care physicians) as a preferred resource for supportive cancer care (SCC), either through direct provision or referral. However, little research exists on the specific role FPs play in addressing these needs. Methods: A mailed survey was sent to all FPs in a health care region in Ontario, Canada, to determine their current and preferred roles in the specific provision of SCC to patients with cancer who have been newly diagnosed or are at the end of life. Results: Completed surveys were received from 84 (64%) of 183 eligible FPs. Most practitioners reported providing for their patients' various SCC needs. However, clear gaps were demonstrated in psychosocial and nutritional counseling and in providing information about SCC services. FPs were satisfied with their current role reported in SCC coordination, although the type of role varied; FPs who were asked about their end-of-life patients tended to see themselves as part of coordinating teams, whereas FPs asked about their recently diagnosed patients were more likely to defer this responsibly to a third party. Conclusion: This study identified gaps in the provision of psychosocial and informational care to patients with cancer that may result in unmet needs. In general, FPs do not see themselves as primarily responsible for coordinating patients' SCC and do not wish to assume this role. Accordingly, models that involve FPs as team members in SCC coordination are more feasible for reducing patient need. Copyright © 2010 by American Society of Clinical Oncology.

Service Provision for Children and Young People with Acquired Brain Injury; Practice Recommendations: – International Paediatric Brain Injury Society (IPBIS).

Background: Providing appropriate rehabilitation services for Acquired Brain Injury (ABI) in childhood presents a number of challenges for caregivers, health and education professionals and the young person as they develop.
Primary Objective: To record the challenges and possible creative solutions generated by an international group of professionals to address the needs of children with ABI.
Review of Information: Recommendations were generated from children’s special interest group meetings of the International Brain Injury Association (Turin Italy, 2001, Stockholm Sweden, 2003, Melbourne Australia, 2005, Lisbon Portugal, 2008) and through meetings of the International Paediatric Brain Injury Society (IPBIS), formed in 2009. Delegates participating in the workshops were representative of nations from around the world and included The Netherlands, New Zealand, Australia, UK, Finland, Germany, South Africa, USA, Canada, Sweden, Brazil and Italy.
Outcomes: The information presented is based on a retrospective review of those meetings and the summaries of the topics considered.

Palliative Medicine:Scoping the level and extent of service provision to people with intellectual disability at end of life Poster Presentation

Background: Concerns exist about the end of life care
that people with intellectual disabilities receive. This population
are seldom referred to palliative care services and
inadequate data sets exist about their place of death.
Aim: To scope the extent of service provision to people
with intellectual disabilities at the end of life by specialist
palliative care and intellectual disability services in one
region of the United Kingdom.
Methods: As part of a larger doctoral study a regional survey
took place of a total sample (n=66) of specialist palliative
care and intellectual disability services using a postal
questionnaire containing forty items. The questionnaire
was informed by the literature and consultation with an
expert reference group. Data were analysed using SPSS to
obtain descriptive statistics.
Results: A total response rate from services of 71.2%
(n=47) was generated. Findings showed a range of experience
among services in providing end of life care to people
with intellectual disabilities in the previous five years, but
general hospitals were reported the most common place of
death. A lack of accessible information on end of life care
for people with learning disabilities was apparent. A few
services (n=14) had a policy to support this population to
make decisions about their care or had used adapted Breaking
Bad News guidelines (n=5) to meet their additional
needs. Both services recognised the value of partnership
working in assessing and meeting the holistic needs of
people with intellectual disabilities at end of life.
Conclusions: A range of experience in caring for people
with intellectual disabilities was present across services,
but more emphasis is required on adapting communication
for this population to facilitate them to participate in their
care. These findings could have international significance
given that studies in other countries have highlighted a
need to widen access to palliative care for this group of
people.